A postmodernist theory of medicine: "CFS/ME" and the PACE trials

What happens when a concept developed to analyze the arts, including literary criticism, migrates to medical science?  The concept is postmodernism, and it is a very strange philosophy for a science having to do with keeping human beings healthy.  Postmodernism is defined a bit differently depending on whether you are discussing postmodernism in architecture, the visual arts, or literary criticism.  However, there are a few basic elements:

• Rejection of a metanarrative
• Rejection of the modernist concept of progressivism - that knowledge improves over time
• Emphasis upon perception over “reality” - to some extent, a rejection of reality itself in the belief that we can only know perception

I am sure there are other ways to characterize postmodernism, but I think these three precepts run through most theories based upon postmodernism.

In this essay, I am going to suggest that there is a school of British psychiatry called “biopsychosocial” which is effectively postmodernist - a most peculiar theory upon which to base the diagnosis and treatment of real human beings in real time.  The patients who have born the brunt of this school of thought are those afflicted with the condition Myalgic Encephalomyelitis (ME), which (by way of a detour through “chronic Epstein-Barr virus”) became known as “chronic fatigue syndrome” in 1988.  It’s not a minor or rare illness - millions of patients worldwide have the disease; over one million in the US and 250,000 in the UK. 

ME, the disease, is based upon a set of symptoms having to do with muscle failure, cognitive dysfunction, “unrefreshing” sleep, and pain.  Perhaps the most unique symptom of ME is a delayed response to exertion, what patients call a “crash,” which can last days or weeks or even become permanent.  The most seriously ill patients with this disease are confined to wheelchairs, bedridden, even on feeding tubes.  It would hardly seem the best choice for a medical theory of postmodernism.

In contrast, “chronic fatigue syndrome,” or CFS, fits the bill for postmodernism perfectly, because it is almost entirely based upon perception - the perception of fatigue.  

ME was first diagnosed in the 1950s to characterize three large outbreaks of disease in the UK, the most famous occurring at the Royal Free Hospital in London as a new term for a condition that had been observed since 1934, “atypical polio.”  With polio supposedly conquered by vaccine (which only contains the 3 strains of polio considered most severe), medical researcher and clinician Melvin Ramsay, along with several colleagues, sought to define a condition that appeared to occur in cluster outbreaks, like polio, but had somewhat different characteristics.  ME was adopted by the World Health Organization in 1969, coded within the chapter on neurological conditions in WHO’s International Classification of Diseases (ICD).  It remains there in ICD-10, the current version.

In 1970 and 1971, psychiatrists McAvedy and Beard published two articles claiming that ME was actually mass hysteria (interesting time - just as psychiatry lost the diagnosis of hysterical paralysis for Multiple Sclerosis, they found a substitute in ME).  Psychiatrists jumped on the name change to CFS in 1988 - in particular, a group of British psychiatrists who declared themselves to be practitioners of something called “biopsychosocial” medicine:  most notably Simon Wessely, Michael Sharpe, and Peter White.  

The “biopsychosocial” school consisted mainly of the claim that its adherents practiced a holistic vision of medicine combining biological, psychological, and social factors - but in practice, very little was ever said about biology.  When the biopsychosocial psychiatrists were asked about the absence of references to biomedical research in their work, they tended to snap back with the non sequitur that the suggestion showed an adherence to “Cartesian mind-body dualism,” and prejudice against psychiatry in general.  

According to these psychiatrists, “CFS” and “CFS/ME” (their terms) was caused by “inappropriate illness beliefs.”  The patient had actually had an illness such as a bad flu in the beginning, but instead of going back to their normal lives after the virus was over, they became afraid to do too much in fear that the symptoms would return.  The result of their inactivity, deconditioning, became the evidence that they were still sick.  The cure could thus be found in a specific form of psychiatric therapy, cognitive behavior therapy (CBT) - to teach the patient that she wasn’t really sick as she thought - and graded exercise therapy (GET) - to get the patient’s body reconditioned.  The combination of positive thoughts about improvement and actual improvement caused by the exercise would therefore “cure” the patient.

The biopsychosocial school, in practice, is postmodernism as medicine:

• Rejection of a metanarrative - in this case, the authors claim to be rejecting outdated beliefs in “Cartesian dualism” that would differentiate between “biomedical” research and “psychiatric” research.
• Rejection of modern concepts of progressivism - the authors reached back to the nineteenth century diagnosis “neurasthenia,” citing books written in the mid-1800s about “nervous disorders.”  Their research, they insisted, was not driven by pure theory but “evidence-based.”  “Evidence-based” obviously sounds like a good idea, except that in this case it was based upon “evidence” from clinics where patients had already been diagnosed using their theories - it was, in effect, a tautology.  But they could then insist they did not have to reference research driven by path-dependent theories linked by time, or answer to critiques of neurasthenia over the past 150 years.  They were only studying the present.  
• Emphasis of perception over reality - the patient only THINKS he or she cannot behave like healthy adults.  It is the perception, these “inappropriate illness beliefs,” that need to be changed.  The cure, then, is to be found in treatments that change that perception both literally, through CBT, and changing the experience itself, through GET.  

It is in this context that I think we can best understand the £5,000,000 study commissioned by the UK government called the “PACE trials.”  The PACE trials were supposed to prove once and for all whether the prescription of CBT/GET could cure the disease the authors called “CFS/ME.”  Since the authors made their living - to a large extent - on the basis of this thesis, one would think the results would be evaluated using a fine tooth comb.  But no sooner had they been published than critiques arose from the community of patients afflicted with the disease, and those who either treated or studied it.  

Patients with backgrounds in medicine, science, and/or research were unable to break through to the public with their critiques.  Many of them asked to see the data behind the study to understand how the conclusions reached could possibly have arisen from the study.  Their requests did not exactly fall on deaf ears - to the contrary, the researchers complained both privately and publicly (in the press) that they were being harassed, the requests for data “vexatious.”  No data was released.  

Four years passed.

This fall, (2015), David Tuller, a Berkley journalism professor who had followed the disease for the New York Times and other outlets, wrote a detailed critique of the study, which was published on the blog site of noted Columbia virologist Vince Racaniello.  There it drew the attention of James Coyne, a clinical health psychologist who has spent several years focusing on deception in research.

In fast succession, a new request for data was filed - and refused. Queen Mary’s University London (QMUL) and King’s College London (KCL) both insisted that the request was without basis, that it was intended only to harass the authors - that is, that it was “vexatious” - and they refused to comply.

For an excellent rundown of where we were in the story as I wrote this essay (12 December 2015), see:

PACE Trials - Forbidden Fruit

Elsewhere on this blog, Slightly Alive, you will find testimony to CFSAC and FDA on my condition, testing, and the experimental immune medicine which enables me to be able to write this essay. 

Here, however, I wanted to add something new to the debate.   What happens when theories inspired by postmodernism encounter a discipline that requires the belief that there is a there, there - there is a real patient, the real patient has a real body, and real things go wrong with that very real body.  The result sounds like scholarship.  It sounds erudite.  But in the end, you cannot separate perception from reality in this manner.  You cannot simply assume that the only problem with a patient is his or her perception of their health, on the basis that (in insurance industry language), the patients’ problem boils down to “medically unexplained symptoms” (which has even earned an acronym, MUS).  

Aside from the costs to the patients who actually have the disease in question, ME, these theories are very dangerous to the larger discipline of medicine.  Just because symptoms have no “medical explanation” does not mean they are based solely upon perception.  No physician can possibly explain every medical symptom - and there are conditions that have yet to be explained.  The absence of an explanation is not proof of the absence of a medical condition.

But in the world of “biopsychosocial” medicine, the absence of an explanation is precisely that:  proof of the absence of a medical condition - of a purely medical condition, they would probably say.

Medical science needs to understand that this theory does not just apply to ME/CFS, and does not just apply to “MUS” conditions.  Simon Wessely, for example, has already applied it to Gulf War Syndrome. 

This is an enormously useful political concept in the current atmosphere of austerity.  Applying CBT and GET is a lot less expensive than testing for immune defects and pathogens, looking at SPECT scans and CPETs, treating with immune modulators and antivirals.  

The British government, which has much to gain from this theory that “CFS/ME” is perception rather than reality, and these researchers, who directly profit from that theory, were hardly disinterested parties to join together in conducting the PACE trials.  The same goes for the institutions SMUL and KCL.

As such, they are not really in a position to reject mounting requests for an independent review of the study.  They should not be permitted the final say.  

The ramifications of their intransigence are great.  There are many conditions to which this new postmodernist view of medicine could be applied, greatly cutting costs without benefitting people in need of care.  The risk is greatest with chronic illness.  It is hardly a secret that both insurance companies and penurious governments are concerned about the mounting costs of chronic illness.  What a convenient theory for such an austere time.  

The authors of the PACE trials (and those who funded the study) must not be permitted to slip away without a thorough examination, because too much is at stake.  Postmodernism and medicine are not a happy coupling.  The effort to join them must undergo even more scrutiny than usual, because what is being tried here is most unusual.  

It is highly unlikely that the authors of the study willingly would allow that data to see the light of day, because so far the evidence suggests the data cannot support the conclusions - and too much is riding on those conclusions.  

If the most basic rules of scholarship are permitted to be broken here, where then will they be enforced?  CFS/ME is merely perception.  Global warming is just biased statistics.  “Fracking” has no effect on the environment.  That may be your “view”, but my “view” is just as important. 

After all, it’s only perception. 

My 20 years with Myalgic Encephalomyelitis

Originally posted May 12, 2014.

I have had Myalgic Encephalomyelitis, or M.E, for 20 years.  The CDC does not recognize this.  They insist that I have a condition called "Chronic Fatigue Syndrome," or CFS.  I have M.E.

At the age of 44 I led a charmed life.  I had been married to the love of my life for 20 years, and we had two lovely children.  We were both college professors - a deliberate choice that allowed us to do what we enjoyed - researching and teaching subjects that deeply interested us - while having the income to live comfortably (because we both worked) and plenty of time to spend with the children (because of the nature of academic life).  I had tenure at a good university, although my sights were set higher than that.  I had a working relationship as an associate fellow with a research institute at an Ivy League school, which enabled me the luxury of being around the best and the brightest in my field.  We traveled all around the country going to each other's conferences, often taking one of the kids along.  We also went to four Olympics, two final fours (NCAA basketball championships) and countless playoff games, several World Series, and, eventually, twenty years of baseball AllStar games.  We skied in the winter and went to the beach in the summer.  It was a charmed life.

On October 24, 1994, I went to my office to grade exams and suffered a blackout.  When I came to, I could not understand one word in the Bluebooks in my lap - they might as well have been written in Cyrillic alphabet.  It took time - and concentration - to be able to stand.  I had fallen down the rabbit hole; my life would never be the same.

Over the next four years I suffered from severe pain in the back of my neck and behind my eyes, 24/7.  My muscles ached, and I had migraine-level headaches.  I had ataxia, dyslexia, sensitivity to light and sound (to the point I had to wear sunglasses all the time), tinnitus, partial paralysis, memory loss, disorientation, expressive dysphasia, and massive confusion.  My family took care of me.  Obviously, I could not drive, and by 1996 I was using a wheelchair when I left the house (which someone else had to push).

I was lucky to have a family to take care of me, because I could not take care of myself.  I also soon discovered an Internet discussion list of fellow sufferers, and was referred to a very good specialist in Washington, Marsha Wallace (who unfortunately hasn't practiced since 2000).  Dr. Wallace taught me to live within my energy envelope and helped with sleep disruption and NMH/POTS, but I continued to deteriorate.

In the fall of 1998, Dr. Wallace introduced me to Dharam Ablashi, a researcher who had just retired from the National Cancer Institute at NIH.  Dr. Ablashi had been the co-discoverer of HHV-6 and it's two variants, A and B, while working with AIDS.  I had the version the AIDS patients did - Variant A - and my viral load was ten times the amount used to diagnose an active infection.

I would also test positive for active EBV or mono (which I had more than once - most notably in 1990, four years before my collapse, during an outbreak on my college campus), CMV (cytomegalovirus), HHV-7, and three strains of Coxsackie B.

My immune system was severely compromised: My natural killer cell function was less than 3%, I had the defective 37kDa Rnase-L, and I had an abnormal cytokine pattern.  But no one knows how all this happened.  All we know is that this disease can occur in cluster outbreaks, and it can pop up in individuals.  No one in my family got it from me, but I believe the outbreak of EBV in 1990 marked the beginning of my illness - the beginning of the cycle of immune defect-virus-damage that characterizes this disease for many of us.  I had to continue to teach through my infection with EBV, including an hour's commute and back, and while I recovered from mono at the end of the fall semester, my health began to deteriorate in seemingly disparate ways, until the ultimate collapse in 1994.

Years later I would have a spinal tap that revealed both HHV-6 and Cytomegalovirus were active in my spinal fluid.  No wonder I had the symptoms of encephalitis, and with the stiff neck, meningitis.  Along with the muscle pain, that meant literally that I had Myalgic Encephalomyelitis, or M.E., a disease that had been diagnosed in the UK since the mid-1950s.  In the United States, however, all I was given was a diagnosis of "chronic fatigue syndrome," a name chosen by committee and adopted by CDC in 1988 to replace the name given a number of cluster outbreaks occurring in the USA at the time, Chronic EBV.  They did not mention M.E. - though there were specialists at the meeting who insisted that was the correct diagnosis for these outbreaks.  They did not ask anyone in the disease community what they thought of this name.  They simply adopted it, and having done so, consigned the disease to the backwaters of medicine where neither research nor treatment could be found.

There could not have been a worse choice of a name for this disease if CDC had hired a focus group,  Chronic (as in chronic whiner) Fatigue (as in "yeah, I've been feeling tired lately myself") Syndrome (as in syndrome of the month) - applied to upper middle class white women "trying to have it all" (as the late Bill Reeves of CDC once phrased it) - how inconsequential, silly even.  A quarter of a century  later, 85% of patients - over one million Americans - have no idea what is wrong with them, because, according to both CDC and private demographic evidence, only 15% have a diagnosis.  26 years later only 15% have a diagnosis.  That is a mighty admission of failure.

The infectious disease specialists in northern Delaware dismissed my illness as minor.  "You'll be back to normal in two years," they assured me. Oh good, I responded - I won't have to miss more than two seasons before I can go back to skiing.  "Oh no," was the response.  "You'll never ski again."  How was that "normal?" I asked.  They got angry at that.  That's when I was referred to Dr. Wallace and, thankfully, only had to deal with these people once more, when I was on the antiviral Vistide for my cytomegalovirus infection.  Dan Peterson, my new specialist, had asked them to let me get the infusions at their center, and they had agreed.  But when I showed up at their office, one of the doctors took me aside and said that they could not let me have Vistide because my medical records showed I "only had CFS - nothing serious, like AIDS or cancer."  They said they could not justify using the drug on someone with a diagnosis of CFS - even though it was an FDA-approved drug for the virus CMV, which was active in both my blood serum and my spinal fluid.

Let me repeat that:  once given the label Chronic Fatigue Syndrome, I would meet disrespect from many doctors and people at NIH and CDC. None of my extensive testing mattered.

Although the progressive version of M.E. that I suffered from was unusually severe, I turned out to be lucky.  I was given the opportunity to go on the experimental Phase III drug Ampligen, in what is called a cost-recovery (I pay cash), compassionate care (I am allowed to do this because I was so very sick), open label (I know I am on the drug so FDA ignores me) study.  I have to get Ampligen at the study site by IV infusion twice a week.  And FDA can take the drug away from me whenever they want.

I have been on Ampligen for eleven of the past fifteen years.  Again, I am unusual in that my illness erupts again within a year of going off the drug (which I did once voluntarily, and once because FDA did take the drug away).  FDA has admitted, in writing, that the drug is not toxic.  But they are not "convinced" it is effective.  My experiences do not count because I was not in a placebo trial; I knew I was on the drug.  There is no other drug in the FDA pipeline for either CFS or M.E. (Although there are immune boosters and antivirals available for patients, and an anti-cancer drug called Rituximab is showing some promise).  This is the only one expressly targeted to M.E. or CFS.  Over one million Americans suffer from my disease.  FDA, CDC, NIH - none of them cares - though in fairness, there are individuals within those agencies who do.  It is those who make decisions who do not care.

[Side note about the obsession with placebo trials - If just knowing you are on a drug can make your immune markers return to normal, your active viruses return to a dormant stage, and change tests such as SPECT scans and CPET scores, we should all be cured of anything by happy thoughts.  Does FDA really believe this?]

So here I am today.  I would not have written this were I not on Ampligen.  On Ampligen, I can drive, take care of myself (mostly), read a book, work on my own writing, spend time with my children and grandchildren.  Off Ampligen I am an invalid in bed in severe pain, curled up in the dark because light is too painful, listening to a favorite movie over and over again.

So twice a week I leave my house at 8:15 and commute by train 100 miles north to Dr. Derek Enlander's office in New York City, the closest site where I can get Ampligen.  I usually get home around 7 pm.  It is grueling, but at least I am getting the drug that keeps me from being a bedridden invalid.

Myalgic Encephalomyelitis is a serious disease.

CDC betrayed us by giving it a silly-sounding name in 1988 - CFS.  NIH allocates $6 million per year to study this disease - a pathetic amount.  MS gets $122/year with half the patients; "Behavioral and Social Science" gets almost $5 billion/year from NIH.

We came back with private research initiatives, funded by cash-strapped patients and their families, and more good biomedical research is being published than ever before.  The whole concept of what "CFS" is, silly sounding name and all, is undergoing a transformation. And for the first time in my memory, clinicians and researchers have agreed on a definition - the Canadian Consensus Criteria, updated with current research.

So how is our government responding?  Suddenly there are three different initiatives within the U.S. department of Health and Human Services (HHS) to redefine the disease and rename it - done behind closed doors.  At CDC there is the Multi-site clinical assessment - which brought in respected clinics, but is now being polluted with research from a poorly conceived and run study by CDC in Georgia that used a different definition entirely.  HHS has turned to the IOM - Institute of Open Medicine - with a committee of whom the majority are not experts in either CFS or M.E.  NIH as a whole has given the "problem" of the name and definition to their  "pathways to prevention" program, or P2P.  In this case a committee was explicitly created consisting of individuals with NO experience -either medical of personal - with the disease, "like the jury system," a spokesman explained cheerfully.  "Stakeholders" with different viewpoints testify to the committee, and then this committee of amateurs will recess and vote on the choice of what to do next.  Precisely when did the jury system replace scientific method in determining medical policy?

[The IOM and P2P reports turned out better than expected, particularly the IOM report, because it has helped bring attention to the plight of over one million Americans suffering from a severe neuro-immune disease.]

They are going against the expressed wishes of 60 specialists who signed a letter asking that the U.S. adopt the Canadian Consensus Criteria (CCC), and the public members of the CFS Advisory Committee to HHS asking that the government adopt the CCC, and hold an open workshop of specialists to update it (it is ten years old) with current research results.  Why are those of us within the world of M.E. ignored?  Why is 60 years of biomedical research into M.E. ignored internationally?

Perhaps more important, why don't people outside our community - people in the media, in government, our doctors, our neighbors, our employers - why don't they know that there is a growing epidemic of a severe, life-altering and in some cases life-taking disease that CDC and NIH are keeping under wraps?  I have friends who were teenagers when they got sick, and are now in their 40s. They did not get to marry their soulmate like I did.  They did not go to college or have a career.  They did not have children or grandchildren (I have two grandchildren now).  I was lucky compared to them.

They can barely afford to live from day to day.  They cannot afford the testing I have had, and they most certainly cannot afford the treatment I am on.

I have lost friends to this disease; we have lost young people to this disease.  The viruses can get into your heart muscle; they can get into your liver.  Patients die of rare cancers as well.  And then there are the suicides.

There has been a new series of outbreaks in the past five years.  Look at those you love, and if you care for them - whether or not you care about us - do something.  Because they could be the next victims.

Thank you for reading.

Coda, 15 November 2015.  The above was written for May 12, 2014 (ME Awareness Day).

I lost the love of my life, my soulmate, my husband of 40 years, to cancer on July 7, 2013.  We had lived in Delaware for 35 years.  To stay on Ampligen - and also because both my soul and my body need healing - I have moved to Incline Village, NV, at Lake Tahoe.  It is beautiful here.  My family (including 2 children and 2 grandchildren) are all back East, but Reno Airport is nearby and I put the cost of Ampligen on a Southwest credit card ...  I am able to get my twice-weekly infusions from Dr. Dan Peterson just 2 miles away.  And this is a good house for writing, so I hope to be able to finish my book manuscript, "Slightly Alive," this winter.  I still live in fear of losing Ampligen.  But I'm okay.

It has been 27 years since CDC adopted the silly name "chronic fatigue syndrome," and even they admit that one million Americans have my disease but no diagnosis.  Where are they?  The question continues to haunt me.

But there are optimistic new developments, from the IOM report (tho flawed, it is getting publicity) to newly locating our disease at NIH in NINDS.  Stanford and Columbia Universities are taking the disease seriously.  The most intriguing new developments are happening as I write, with healthy professionals finally asking that the PACE trial (whose authors claim cognitive behavior therapy and graded exercise cured "CFS/ME") be investigated by impartial scientists - thank you Dave Tuller, James Coyne, Vince Racaniello, Ron Davis, Jonathan Edwards, Leonard Jason, Bruce Levin, and Arthur Reingold.  It would be nice to report that although we don't know the answer, we are finally getting the funds to find it.  Even better to be able to say patients are finally being diagnosed, taken care of, and treated.   The first step is getting the severity and prevalence of Myalgic Encephalomyelitis recognized.  Let us hope that won't take another 27 years.

Justice for Karina Hansen

I am reposting this urgent message from fellow patient Wendy Boutilier.  We believe this is a human rights violation and need international help for this young woman, imprisoned in a mental hospital for 2 1/2 years for the sin of having Myalgic Encephalomyelitis.  She was 24 when taken from her family; she just turned 27.

On February 12, 2013, five policemen from Holesbro County, Denmark, came to ME patient Karina Hansen's house and forcibly removed her from her bed.  

There were also 2 doctors, a locksmith, and 2 social workers present.

Karina called for her mother's help, but her mother was blocked by the police from aiding her.

Karina used her mobile phone for the first time in years to call her mother, her father, her cousin and her sister, Janni.

Karina is so ill that she can usually only speak in one or two word sentences, but during her removal she managed to call her father and say:  

"Help Dad!  In my room!"  and to her sister:  "Help, Janni!  I don't know where they are taking me!"

Karina's mother could not answer her phone because she was surrounded by policemen.

Karina was then driven to a hospital in an ambulance.  Her parents were not told where Karina was being taken or what reason they had for taking her.  No paperwork was given to her parents.

Later that day, they got a phone call and were told that Karina was at Hammel Neurocenter and that someone would call them every day at 10 am to tell them how Karina was doing.

They were also told that no one could visit Karina for 14 days.

On the morning of February 13, Karina managed to call her mother from her mobile phone.  She said:

"How can I get out of here?  I can't take this."  [Hvordan kan jeg komme væk herfra?  Jeg kan ikke klare det.]  Then the connection was cut.

A few days later, Karina's parents got a letter from a psychiatrist Nils Balle Christensen, which said he would be in charge of Karina's treatment at Hammel Neurocenter.  He also wrote that because of her condition, Karina was not allowed visitors for 14 days.

That ban on visitors was later extended to three weeks because Dr. Christensen was on vacation.  Nils Balle Christensen works at the Research Clinic for Functional Disorders and Psychosomatics.  He and his superior, psychiatrist Per Fink, believe that Myalgic Encephalomyelitis (ME) is a functional disorder.  [Note from MS:  The sister was finally allowed a visit, but burst into tears at the condition in which she found Karina, and after that NO family visitors have been permitted.  For over two years.]

"Functional disorder" has replaced the term "psychosomatic illness" in psychiatry-speak.  In this case, they had expanded it to what was called "Münchausen Syndrome by Proxy (MSBP)," or it's modern incarnation, "factitious illness by proxy," where the parents are accused of making their child appear sick.  The treatments the clinic recommends are:  exercise (GET), cognitive behavioral therapy (CBT), and antidepressants.

[Note from MS:  If you have seen "Sixth Sense," you have seen a fictional case of MSBP.  But it has been shown time and time again that while this may actually happen in a few very rare cases, there's no need for a special diagnostic category - the diagnosis "psychopath" already exists and fits the situation.  But then it would be the parents who should be put in a mental hospital, not the child.  As for the treatment, psychotherapy may help a patient accept the condition (as in MS), but cannot cure the disease.  Indeed, the insistence by European psychiatrists that psychotherapy will cure this disease is reminiscent of the days when MS was called "hysterical paralysis" - except the European psychiatrists prefer the old term for the vapors, "neurasthenia."  A new category was created recently, "Somatic Symptoms Disorder," and Per Fink, one of the psychiatrists involved in this case, is active in WHO and trying to get this accepted as a category in ICD-11.  Karina's case thus has political overtones, unfortunately, which has made the psychiatrists involved unwilling to compromise.

Note continued:  There has been significant research published showing that graded exercise is actually dangerous for even high-functioning patients, and this young woman is extremely disabled.]

The psychiatrists at this clinic have no experience with severely ill ME patients and we fear that Karina is being treated incorrectly, and that their mistreatment of her will lead to a severe and permanent worsening of her condition.

[Note from MS:  This has occurred in the UK where it is not uncommon for young ME patients to be "sectioned" - forcibly committed to a mental hospital against their will - and they have come out of the hospital in much worse condition than when they entered.  In one tragic case, Sophia Mirza died from irreversible damage to her condition that occurred in a mental hospital.  Her autopsy showed significant damage to the basal root ganglia, and a formal  inquiry concluded she died of ME.]

Various petitions have been set up and signed, letters have been sent to MPs in the UK, European Union Danish Ministry of Health, Danish Government of Power and the Danish Royal Family, all to no avail.

There is no contact permitted between Karina and her family, and there has only been limited contact permitted between Karina and her lawyer, as well as the Myalgic Encephalomyelitis Association of Denmark.  Some updates on her condition is published from time to time, but it is basically censored.

Inside information tells a different story.  Karina believes they are trying to kill her with this line of treatment.  Her condition is worse now than before she was hospitalized.  Unfortunately, that is what could be predicted given the severity of her disease when she entered the mental hospital and the rigid beliefs of this branch of the psychiatric profession in Denmark.

All of Karina's human rights have been severed.  We have not been provided with the name of her lawyer and/or representative with the United Nations Human Rights Council, and we have no uncensored contact with Karina or any of her representatives.

There are a number of petitions being circulated, but this one has the most names, so if you can add your name to it we would be grateful.  If you belong to any human rights organizations, tell them about Karina's case.  And RETWEET!!

JUSTICE FOR KARINA
Share Widely
TWITTER:http://www.avaaz.org/en/petition/Justice_for_Karina/?twi
Avaaz:http://www.avaaz.org/en/petition/Justice_for_Karina/?email
PLEASE SIGN, EVEN IF YOU HAVE SIGNED OTHERS

----------------------

URGENT - you can sign a letter to the new Prime Minister of Denmark by going to this website:

Letter about Karina to Danish PM 

Welcome to ICD-10-CM

On October 1, the entire medical establishment in the US had to change the medical codes they use for reimbursement for medical expenditures from insurance companies and the government.  You can imagine the mess - if you're real lucky, you can experience the mess in person.  But here I just want to explain what this means for patients in the U.S. with a diagnosis of CFS (chronic fatigue syndrome) or ME (myalgic encephalomyelitis).

That is because we have finally updated from ICD-9-CM to ICD-10-CM.  More on that later.

All you really need to know is that ME remains in the chapter on neurology at the classification G93.3, along with postviral fatigue syndrome (which is a British name that has not been used much, if at all, in the United States).  CFS "remains" (from CDC's perspective) in a different chapter for vaguely defined symptoms at R53.82.  However, the rest of the world (which has been using ICD-10 for 1-2 decades now) has CFS coded to G93.3 with M.E.  So what appears not to be a change actually IS a change, and a significant one.  How did we end up to be the only nation in the world who codes "CFS" under "General symptoms and signs: Malaise and fatigue"?

Let's start with some history.

The World Health Organization (WHO) puts out an International Classification of Diseases, and has done so since World War II.  For more information, go to:  WHO: International Classification of Diseases (ICD).

WHO's ICD's have gone through 10 revisions and they are now working on ICD-11.

In the 1980s, there were a series of cluster outbreaks throughout the United States of a disease that was probably Myalgic Encephalomyelitis (ME) - except that the name and diagnosis was not used in the US.  First the outbreaks were labeled Chronic Epstein-Barr Virus (CEBV), because a lot of cases seemed to start with mono, but that theory was soon discarded by NIH's point man on EBV, Stephen Straus.  He then began using the phrase "the chronic fatigue syndrome" to identify the outbreaks in internal memos in 1986.

CDC convened a committee in 1988 to rename and define CEBV.  There were specialists at the meeting who insisted the outbreaks were really cases of ME, but neither Gary Holmes from CDC, nor Straus from NIH, paid any attention to that.  ME is not mentioned in either the body or footnotes of the resulting article, which became known because it gave the first definition for CFS:  Holmes (1988).

The name and concept CFS was thus thrown out to the world in 1988.  At the time, WHO was on ICD-9 (the 9th revision), but was no longer making changes to ICD-9 because they were getting ready to roll out ICD-10.  And ICD-10 was released to the world in 1992.

Since CFS was not in ICD-9, as long as the US continued to use it, they were free to place CFS wherever they wanted.  The US uses a modification of ICD-9 called ICD-9-CM (for "clinical modification").  In 1997, the US placed CFS in 780.71, under "Symptoms, Signs, and Ill-Defined Syndromes" in ICD-9-CM.  And there it has remained for almost 20 years.

In the meantime, the rest of the world was adopting ICD-10.  By 2000, most were using it, including the UK.

Myalgic Encephalomyelitis (ME) has been in WHO's ICD codes since 1969, when it was first placed under neurology.  The British had been using the name and diagnosis ME for almost 15 years by then.  It had briefly begun as "benign" Myalgic Encephalomyelitis in the mid-1950s, when there were three major cluster outbreaks in the UK (replacing the name atypical polio that had been in use, along with a few other terms, since 1934).  "Benign" had been stuck on the name because people were not dying in the streets from it, but the word was quickly discarded:  As Melvin Ramsay, who went on to write two textbooks on ME, commented, there was nothing "benign" about ME!  For some reason, when WHO first coded ME, they included "benign" in the name, and it's still there, although nobody else uses it.

ME is coded in ICD-9 and ICD-9-CM at 323.9 under neurology.  It remained there in ICD-10, at G93.3, but it took second place in that category to post-viral fatigue syndrome, or PVFS (briefly fashionable as a diagnosis).  CFS was never placed in the tabular, or more formal version of ICD-10 - however, it was placed in the index, and there it is coded to G93.3.

Canada, like the US, uses its own version of ICD-10, called ICD-10-CA.  Since there were physicians in Canada who diagnosed ME, and physicians who diagnosed CFS, for what appeared to be the same disease, the Canadians placed CFS in the tabular version with ME at G93.3 when they adopted ICD-10-CA in 2001.  The Canadian Consensus Criteria, which has been very popular in the ME and CFS community, was created by a committee convened by the National ME/FMS Action Network of Canada in 2003 in response to the blending of M.E. and CFS in G93.3 - and that is why the document uses ME/CFS throughout.

But while the rest of the world had long converted to ICD-10, the US remained on ICD-9-CM.  One explanation is that hospitals and medical clinics protested the planned adoption of ICD-10-CM in the early 00's because it would be expensive.  (Why they thought it would be easier later is a mystery to me.)  The US has remained on ICD-9-CM 23 years after WHO adopted ICD-10 - and today, as we have just shifted to ICD-10-CM, WHO is within a couple of years of adopting ICD-11.

The agency responsible for the ICD-(whichever)-CD's in the US is the National Center for Health Statistics (NCHS) within CDC.  (And that is where you will find the Official Version of ICD-10-CM.)

Advocates in the US had expected CFS to be moved to G93.3 in ICD-10-CM - indeed, when Donna Pickett of NCHS first presented the proposed changes to ICD-10-CM to CFSAC, that is where she said it would go.  However, the late William Reeves, who ran CDC's program on CFS, was visibly distressed by this.  According to Reeves, the only way he knew to diagnose CFS was to start with chronic fatigue and then distill it further into chronic fatigue syndrome.  He could not do that if it was classified at G93.3 - and, furthermore, he did not believe the condition was neurological in nature.

So Pickett returned to CFSAC, and this time she suggested two classifications for CFS - CFS (postviral) would be placed in G93.3, and CFS (NOS) at R53.82 - in the chapter "General symptoms and signs," further characterized as "Malaise and fatigue."  NOS stands for "not otherwise specified," in reference to CFS (postviral) in G93.3.  The R53.82 was roughly equivalent to 780.71 in ICD-9-CM, so Reeves was satisfied.  

However, soon word came out (and I don't know from whom) that CFS (postviral) was really the same thing as post-viral fatigue syndrome (PVFS), so CFS (postviral) was dumped from the draft of ICD-10-CM.  That meant there was only ONE code for CFS - R53.82, CFS (NOS).  It was peculiar that they retained "NOS" after deleting the only other code ever specified for CFS in ICD-10-CM.  But there it is.  

CDC, NCHS, Reeves, and his replacement Elizabeth Unger, all insisted that placing CFS in R53.82 meant they were not "making a change" to the code for CFS.  Well, that was certainly the perspective from the US.

But the ICD codes do not originate in the US.  They originate at the multinational organization WHO.  And R53.82 represents a significant change from the coding used by WHO's ICD-10, G93.3 - a code accepted by more than one hundred nations.  To say it hasn't changed is both disingenuous and self-centered.  

In the meantime, in the late 1990s, the UK was having its own problems with the G93.3 code for CFS.  British psychiatrists who had made their careers portraying CFS as a somaticizing (psychosomatic) disorder, specifically Simon Wessely and Peter White, wrote in textbooks that CFS was really "neurasthenia" (a "nervous disorder," once known as "the vapors" ...), and should be coded in F48.0 with neurasthenia under the chapter on psychiatry.

The Countess of Mar in Parliament protested the equation of CFS (and by extension, ME) with neurasthenia.  Andre L'Hours of WHO responded with a letter to Parliament stating that it was against WHO's regulations for signatory nations to move a disease into a different chapter (after all, the purpose of the ICD codes was to be able to coordinate information on diseases internationally).  Parliament told the British psychiatrists to issue an errata slip, which they did ... but the next year the same dance was repeated.

Earlier this year, when the Institute of Medicine at the National Academies of Sciences in Washington issued an NIH-commissioned report on the name and definition for CFS, they explicitly rejected codes that placed CFS in the "R" chapter, and codes that placed CFS with neurasthenia.  That presumably left G93.3, but they did not make that explicit.  CFSAC (the Chronic Fatigue Syndrome Advisory Committee at HHS) did make it explicit, and stated that the name M.E. should be used and the disease placed in G93.3 until we knew more about it.  CFSAC has been making that suggestion since 2004, when they advised HHS to adopt 323.9 in ICD-9-CM (the equivalent of G93.3 in ICD-10) and also adopt the Canadian Consensus Criteria.  HHS has not responded.

Well, there we are.  The US has apparently violated WHO's rules about placing a disease in a different chapter by using R53.82 - more to the point, it is simply cruel to the one million patients suffering from this serious disease - as debilitating as MS, end-stage renal disease, cancer, and AIDS - as merely afflicted by something vaguely termed "malaise and fatigue."  Furthermore, the R category is what is known as garbage diagnoses - conditions that are characterized by what they are not, not what they are. CFS (Fukuda 1994), M.E. (Canada 2011), and the latest incarnation, SEID (IOM 2015) can all be positively diagnosed by what they ARE.  In fact, there is substantial evidence of immunological, neurological, and cardiological damage.  There is evidence of chronic viral assaults.  There are biomarkers being used by specialists today.  (For the biomarkers that my own specialists have used, see my blog post from May 12, 2014: My 20 years with Myalgic Encephalomyelitis.)

But this is really nothing new.  It is the same old same old.  It is CDC being CDC.  It has been 27 years since CDC adopted "chronic fatigue syndrome" for the name of this disease - and even CDC admits there are at least 850,000 adult Americans who have the disease but have no diagnosis.  Many of these are people of lower income and people of color.  I think it is a damning admission of failure.  

So is the code R53.82.

May 12, 2015: 20 years with Myalgic Encephalomyelitis

I have had Myalgic Encephalomyelitis, or M.E, for 20 years.  The CDC does not recognize this.  They insist that I have a condition called "Chronic Fatigue Syndrome," or CFS.  I have M.E.

At the age of 44 I led a charmed life.  I had been married to the love of my life for 20 years, and we had two lovely children.  We were both college professors - a deliberate choice that allowed us to do what we enjoyed - researching and teaching subjects that deeply interested us - while having the income to live comfortably (because we both worked) and plenty of time to spend with the children (because of the nature of academic life).  I had tenure at a good university, although my sights were set higher than that.  I had a working relationship as an associate fellow with a research institute at an Ivy League school, which enabled me the luxury of being around the best and the brightest in my field.  We traveled all around the country going to each other's conferences, often taking one of the kids along.  We also went to four Olympics, two final fours (NCAA basketball championships) and countless playoff games, several World Series, and, eventually, twenty years of baseball AllStar games.  We skied in the winter and went to the beach in the summer.  It was a charmed life.

On October 24, 1994, I went to my office to grade exams and suffered a blackout.  When I came to, I could not understand one word in the Bluebooks in my lap - they might as well have been written in Cyrillic alphabet.  It took time - and concentration - to be able to stand.  I had fallen down the rabbit hole; my life would never be the same.

Over the next four years I suffered from severe pain in the back of my neck and behind my eyes, 24/7.  My muscles ached, and I had migraine-level headaches.  I had ataxia, dyslexia, sensitivity to light and sound (to the point I had to wear sunglasses all the time), tinnitus, partial paralysis, memory loss, disorientation, expressive dysphasia, and massive confusion.  My family took care of me.  Obviously, I could not drive, and by 1996 I was using a wheelchair when I left the house (which someone else had to push).  My confusion was so bad I once poured a pot of coffee into a silverware drawer convinced it was a cup.  When my family took me somewhere, one of them would have to fasten my seatbelt because I couldn't remember what those two things were for.

Most of the time, however, my family went without me.  Increasingly I spent most of my time lying curled up in bed in the dark, listening to a favorite movie (because I could not bear to look at the screen).   I got around the house by balancing against furniture and my golden retriever, but increasingly I spent the entire day upstairs.  By the end of 1998, I couldn't even brush my own teeth.  All that time, just slipping by.

I was lucky to have a family to take care of me, because I could not take care of myself.  I also soon discovered an Internet discussion list of fellow sufferers, and was referred to a very good specialist in Washington, Marsha Wallace (who unfortunately hasn't practiced since 2000).  Dr. Wallace taught me to live within my energy envelope and helped with sleep disruption and NMH/POTS, but I continued to deteriorate.

In the fall of 1998, Dr. Wallace introduced me to Dharam Ablashi, a researcher who had just retired from the National Cancer Institute at NIH.  Dr. Ablashi had been the co-discoverer of HHV-6 and it's two variants, A and B, while working with AIDS.  I had the version the AIDS patients did - Variant A.  My viral load was over five times the amount used to diagnose an active infection.

I would later positive for active EBV or mono (which I had more than once - most notably in 1990, four years before my collapse, during an outbreak on my college campus), CMV (cytomegalovirus), HHV-7, and three strains of Coxsackie B.

My immune system was severely compromised: My natural killer cell function was less than 3% (normal is about 50%), I had the defective 37kDa Rnase-L, and I had an abnormal cytokine pattern.  But no one knows how all this happened.  All we know is that this disease can occur in cluster outbreaks, and it can pop up in individuals.  No one in my family got it from me, but I believe the outbreak of EBV in 1990 marked the beginning of my illness - the beginning of the cycle of immune defect-virus-damage that characterizes this disease for many of us.  I had to continue to teach through my infection with EBV, including an hour's commute and back, and while I recovered from mono at the end of the fall semester, my health began to deteriorate in seemingly disparate ways, until the ultimate collapse in 1994.

Years later I would have a spinal tap that revealed both HHV-6 and Cytomegalovirus were active in my spinal fluid.  No wonder I had the symptoms of encephalitis, and with the stiff neck, meningitis.  Along with the muscle pain, that meant literally that I had Myalgic Encephalomyelitis, or M.E., a disease that had been diagnosed in the UK since the mid-1950s.  In the United States, however, all I was given was a diagnosis of "chronic fatigue syndrome," a name chosen by committee and adopted by CDC in 1988 to replace the name given a number of cluster outbreaks occurring in the USA at the time, Chronic EBV.  They did not mention M.E. - though there were specialists at the meeting who insisted that was the correct diagnosis for these outbreaks.  They did not ask anyone in the disease community what they thought of this name.  They simply adopted it, and having done so, consigned the disease to the backwaters of medicine where neither research nor treatment could be found.

There could not have been a worse choice of a name for this disease if CDC had hired a focus group,  Chronic (as in chronic whiner) Fatigue (as in "yeah, I've been feeling tired lately myself") Syndrome (as in syndrome of the month) - applied to upper middle class white women "trying to have it all" (as the late Bill Reeves of CDC once phrased it) - how inconsequential, silly even.

Twenty-five years later, 85% of patients - over one million Americans - have no idea what is wrong with them, because, according to both CDC and private demographic evidence, only 15% have a diagnosis.  25 years later only 15% have a diagnosis.  That is a mighty admission of failure.

The infectious disease specialists in northern Delaware dismissed my illness as minor.  "You'll be back to normal in two years," they assured me. Oh good, I responded - I won't have to miss more than two seasons before I can go back to skiing.  "Oh no," was the response.  "You'll never ski again."  How was that "normal?" I asked.  They got angry at that.  That's when I was referred to Dr. Wallace and, thankfully, only had to deal with these people once more, when I was on the antiviral Vistide for my cytomegalovirus infection.  Dan Peterson, my new specialist, had asked them to let me get the infusions at their center, and they had agreed.  But when I showed up at their office, one of the doctors took me aside and said that they could not let me have Vistide because my medical records showed I "only had CFS - nothing serious, like AIDS or cancer."  They said they could not justify using the drug on someone with a diagnosis of CFS - even though it was an FDA-approved drug for the virus CMV, which was active in both my blood serum and my spinal fluid.

Let me repeat that:  once given the label Chronic Fatigue Syndrome, I would meet disrespect from many doctors and people at NIH and CDC. None of my extensive testing mattered.  I was told twice by those in a position to know better, that none of my testing mattered because "you people test positive for viruses you don't have."  I asked what evidence that was based on; that ended the conversation.

Although the progressive version of M.E. that I suffered from was unusually severe, I turned out to be lucky.  I was given the opportunity to go on the experimental Phase III drug Ampligen, in what is called a cost-recovery (I pay cash), compassionate care (I am allowed to do this because I was so very sick), open label (I know I am on the drug so FDA ignores me) study.  I have to get Ampligen at the study site by IV infusion twice a week.  And FDA can take the drug away from me whenever they want.

I have been on Ampligen for 13 of the past 17 years.  Again, I am unusual in that my illness erupts again within a year of going off the drug (which I did once voluntarily, and once because FDA did take the drug away).  FDA has admitted, in writing, that the drug is not toxic.  But they are not "convinced" it is effective.  My experiences do not count because I was not in a placebo trial; I knew I was on the drug.  There is no other drug in the FDA pipeline for either CFS or M.E. (Although there are immune boosters and antivirals available for patients, and an anti-cancer drug called Rituximab is showing some promise).  This is the only one expressly targeted to M.E. or CFS.  Over one million Americans suffer from my disease.  FDA, CDC, NIH - none of them cares - though in fairness, there are individuals within those agencies who do.  It is those who make decisions who do not care.

[Side note about the obsession with placebo trials - If just knowing you are on a drug can make your immune markers return to normal, your active viruses return to a dormant stage, and change tests such as SPECT scans and CPET scores, we should all be cured of anything by happy thoughts.  Does FDA really believe this?]

So here I am today.  I would not have written this were I not on Ampligen.  On Ampligen, I can drive, take care of myself (mostly), read a book, work on my own writing, spend time with my children and grandchildren.  Off Ampligen I am an invalid in bed in severe pain, curled up in the dark because light is too painful, listening to a favorite movie over and over.  Again.

As the years past, it became more and more difficult to get Ampligen, because FDA refused to approve it.  The last three years I spent in Delaware, I had to commute by train twice a week, 100 miles north, to Dr. Derek Enlander's office in New York City, the closest site where I could get Ampligen.  I usually get home around 7 pm.  It was grueling, but at least I am getting the drug that keeps me from being a bedridden invalid.

And then my beloved husband, my best friend, my soulmate, died of bladder cancer in July 2013.  I moved to Incline Village, NV, on Lake Tahoe, where one of the best clinician/researchers in the country practices, Dan Peterson.  (The most famous cluster outbreak of the disease in the US occurred here in 1985 - over 200 patients.)  My infusions are just two miles away now.  I'd like to call the version I have of this disease Peterson's Disease, but he won't let me.  There are a lot of patients here who have the same biomarkers I do.

Myalgic Encephalomyelitis is a serious disease.

CDC betrayed us by giving it a silly-sounding name in 1988 - CFS.  NIH allocates less than $5 per patient per year to study this disease - a pathetic amount.  After a report they commissioned from the Institute of Medicine came back last year, saying this was emphatically not a psychiatric disorder, and that NIH needed to spend much more money on it, we were promised more funding - but so far, haven't received anything above the usual $5-6 million.   See "Beyond Myalgic Encephalomyelitis".

We came back with private research initiatives, funded by cash-strapped patients and their families, and more good biomedical research is being published than ever before.  The whole concept of what "CFS" is, silly sounding name and all, is undergoing a transformation. And for the first time in my memory, clinicians and researchers have agreed on a definition - the Canadian Consensus Criteria, updated with current research.  There are excellent research studies going on at Stanford, Columbia, and Cornell right now - but they get little, if any, NIH funding.  Even Ron Davis, the Stanford scientist responsible for the human genome project, can't get funding out of NIH for this disease.

The main study behind the government's prescription of psychiatric counseling and graded exercise, the PACE trial, has been exposed as a giant boondoggle - but at the moment, the scientific  journal that published it, The Lancet, the institutions behind it in the UK, and the UK government, are still pretending they don't know how deeply flawed it was.  See PACE: The research that sparked a patient rebellion and changed medicine.

Perhaps more important, why don't people outside our community - people in the media, in government, our doctors, our neighbors, our employers - why don't they know that there is a growing epidemic of a severe, life-altering and in some cases life-taking disease that CDC and NIH are keeping under wraps?  I have friends who were teenagers when they got sick, and are now in their 40s. They did not get to marry their soulmate like I did.  They did not go to college or have a career.  They did not have children or grandchildren (I have two grandchildren now).  I was lucky compared to them.

There are patients who are even worse than I was - completely bedridden, on feeding tubes.  See The 25% ME Group and the story of Whitney Dafoe in the Washington Post.

They can barely afford to live from day to day.  Few can afford the testing I have had - if they can afford it, they can't get anyplace that does it.  They go untreated, hidden, silenced.

I have lost too many friends to this disease; we have lost young people to this disease.  The viruses can get into your heart muscle; they can get into your liver.  Patients die of rare cancers as well.  And then there are the suicides.

There has been a new series of outbreaks in the past five years.  Look at those you love, and if you care for them - whether or not you care about us - do something.  Because they could be the next victims.

Thank you for reading.

May 12, 2015: 20 years with Myalgic Encephalomyelitis

I have had Myalgic Encephalomyelitis, or M.E, for 20 years.  The CDC does not recognize this.  They insist that I have a condition called "Chronic Fatigue Syndrome," or CFS.  I have M.E.

At the age of 44 I led a charmed life.  I had been married to the love of my life for 20 years, and we had two lovely children.  We were both college professors - a deliberate choice that allowed us to do what we enjoyed - researching and teaching subjects that deeply interested us - while having the income to live comfortably (because we both worked) and plenty of time to spend with the children (because of the nature of academic life).  I had tenure at a good university, although my sights were set higher than that.  I had a working relationship as an associate fellow with a research institute at an Ivy League school, which enabled me the luxury of being around the best and the brightest in my field.  We traveled all around the country going to each other's conferences, often taking one of the kids along.  We also went to four Olympics, two final fours (NCAA basketball championships) and countless playoff games, several World Series, and, eventually, twenty years of baseball AllStar games.  We skied in the winter and went to the beach in the summer.  It was a charmed life.

On October 24, 1994, I went to my office to grade exams and suffered a blackout.  When I came to, I could not understand one word in the Bluebooks in my lap - they might as well have been written in Cyrillic alphabet.  It took time - and concentration - to be able to stand.  I had fallen down the rabbit hole; my life would never be the same.

Over the next four years I suffered from severe pain in the back of my neck and behind my eyes, 24/7.  My muscles ached, and I had migraine-level headaches.  I had ataxia, dyslexia, sensitivity to light and sound (to the point I had to wear sunglasses all the time), tinnitus, partial paralysis, memory loss, disorientation, expressive dysphasia, and massive confusion.  My family took care of me.  Obviously, I could not drive, and by 1996 I was using a wheelchair when I left the house (which someone else had to push).  My confusion was so bad I once poured a pot of coffee into a silverware drawer convinced it was a cup.  When my family took me somewhere, one of them would have to fasten my seatbelt because I couldn't remember what those two things were for.

Most of the time, however, my family went without me.  Increasingly I spent most of my time lying curled up in bed in the dark, listening to a favorite movie (because I could not bear to look at the screen).   I got around the house by balancing against furniture and my golden retriever, but increasingly I spent the entire day upstairs.  By the end of 1998, I couldn't even brush my own teeth.  All that time, just slipping by.

I was lucky to have a family to take care of me, because I could not take care of myself.  I also soon discovered an Internet discussion list of fellow sufferers, and was referred to a very good specialist in Washington, Marsha Wallace (who unfortunately hasn't practiced since 2000).  Dr. Wallace taught me to live within my energy envelope and helped with sleep disruption and NMH/POTS, but I continued to deteriorate.

In the fall of 1998, Dr. Wallace introduced me to Dharam Ablashi, a researcher who had just retired from the National Cancer Institute at NIH.  Dr. Ablashi had been the co-discoverer of HHV-6 and it's two variants, A and B, while working with AIDS.  I had the version the AIDS patients did - Variant A.  My viral load was over five times the amount used to diagnose an active infection.

I would later positive for active EBV or mono (which I had more than once - most notably in 1990, four years before my collapse, during an outbreak on my college campus), CMV (cytomegalovirus), HHV-7, and three strains of Coxsackie B.

My immune system was severely compromised: My natural killer cell function was less than 3% (normal is about 50%), I had the defective 37kDa Rnase-L, and I had an abnormal cytokine pattern.  But no one knows how all this happened.  All we know is that this disease can occur in cluster outbreaks, and it can pop up in individuals.  No one in my family got it from me, but I believe the outbreak of EBV in 1990 marked the beginning of my illness - the beginning of the cycle of immune defect-virus-damage that characterizes this disease for many of us.  I had to continue to teach through my infection with EBV, including an hour's commute and back, and while I recovered from mono at the end of the fall semester, my health began to deteriorate in seemingly disparate ways, until the ultimate collapse in 1994.

Years later I would have a spinal tap that revealed both HHV-6 and Cytomegalovirus were active in my spinal fluid.  No wonder I had the symptoms of encephalitis, and with the stiff neck, meningitis.  Along with the muscle pain, that meant literally that I had Myalgic Encephalomyelitis, or M.E., a disease that had been diagnosed in the UK since the mid-1950s.  In the United States, however, all I was given was a diagnosis of "chronic fatigue syndrome," a name chosen by committee and adopted by CDC in 1988 to replace the name given a number of cluster outbreaks occurring in the USA at the time, Chronic EBV.  They did not mention M.E. - though there were specialists at the meeting who insisted that was the correct diagnosis for these outbreaks.  They did not ask anyone in the disease community what they thought of this name.  They simply adopted it, and having done so, consigned the disease to the backwaters of medicine where neither research nor treatment could be found.

There could not have been a worse choice of a name for this disease if CDC had hired a focus group,  Chronic (as in chronic whiner) Fatigue (as in "yeah, I've been feeling tired lately myself") Syndrome (as in syndrome of the month) - applied to upper middle class white women "trying to have it all" (as the late Bill Reeves of CDC once phrased it) - how inconsequential, silly even.

Twenty-five years later, 85% of patients - over one million Americans - have no idea what is wrong with them, because, according to both CDC and private demographic evidence, only 15% have a diagnosis.  25 years later only 15% have a diagnosis.  That is a mighty admission of failure.

The infectious disease specialists in northern Delaware dismissed my illness as minor.  "You'll be back to normal in two years," they assured me. Oh good, I responded - I won't have to miss more than two seasons before I can go back to skiing.  "Oh no," was the response.  "You'll never ski again."  How was that "normal?" I asked.  They got angry at that.  That's when I was referred to Dr. Wallace and, thankfully, only had to deal with these people once more, when I was on the antiviral Vistide for my cytomegalovirus infection.  Dan Peterson, my new specialist, had asked them to let me get the infusions at their center, and they had agreed.  But when I showed up at their office, one of the doctors took me aside and said that they could not let me have Vistide because my medical records showed I "only had CFS - nothing serious, like AIDS or cancer."  They said they could not justify using the drug on someone with a diagnosis of CFS - even though it was an FDA-approved drug for the virus CMV, which was active in both my blood serum and my spinal fluid.

Let me repeat that:  once given the label Chronic Fatigue Syndrome, I would meet disrespect from many doctors and people at NIH and CDC. None of my extensive testing mattered.  I was told twice by those in a position to know better, that none of my testing mattered because "you people test positive for viruses you don't have."  I asked what evidence that was based on; that ended the conversation.

Although the progressive version of M.E. that I suffered from was unusually severe, I turned out to be lucky.  I was given the opportunity to go on the experimental Phase III drug Ampligen, in what is called a cost-recovery (I pay cash), compassionate care (I am allowed to do this because I was so very sick), open label (I know I am on the drug so FDA ignores me) study.  I have to get Ampligen at the study site by IV infusion twice a week.  And FDA can take the drug away from me whenever they want.

I have been on Ampligen for 13 of the past 17 years.  Again, I am unusual in that my illness erupts again within a year of going off the drug (which I did once voluntarily, and once because FDA did take the drug away).  FDA has admitted, in writing, that the drug is not toxic.  But they are not "convinced" it is effective.  My experiences do not count because I was not in a placebo trial; I knew I was on the drug.  There is no other drug in the FDA pipeline for either CFS or M.E. (Although there are immune boosters and antivirals available for patients, and an anti-cancer drug called Rituximab is showing some promise).  This is the only one expressly targeted to M.E. or CFS.  Over one million Americans suffer from my disease.  FDA, CDC, NIH - none of them cares - though in fairness, there are individuals within those agencies who do.  It is those who make decisions who do not care.

[Side note about the obsession with placebo trials - If just knowing you are on a drug can make your immune markers return to normal, your active viruses return to a dormant stage, and change tests such as SPECT scans and CPET scores, we should all be cured of anything by happy thoughts.  Does FDA really believe this?]

So here I am today.  I would not have written this were I not on Ampligen.  On Ampligen, I can drive, take care of myself (mostly), read a book, work on my own writing, spend time with my children and grandchildren.  Off Ampligen I am an invalid in bed in severe pain, curled up in the dark because light is too painful, listening to a favorite movie over and over.  Again.

As the years past, it became more and more difficult to get Ampligen, because FDA refused to approve it.  The last three years I spent in Delaware, I had to commute by train twice a week, 100 miles north, to Dr. Derek Enlander's office in New York City, the closest site where I could get Ampligen.  I usually get home around 7 pm.  It was grueling, but at least I am getting the drug that keeps me from being a bedridden invalid.

And then my beloved husband, my best friend, my soulmate, died of bladder cancer in July 2013.  I moved to Incline Village, NV, on Lake Tahoe, where one of the best clinician/researchers in the country practices, Dan Peterson.  (The most famous cluster outbreak of the disease in the US occurred here in 1985 - over 200 patients.)  My infusions are just two miles away now.  I'd like to call the version I have of this disease Peterson's Disease, but he won't let me.  There are a lot of patients here who have the same biomarkers I do.

Myalgic Encephalomyelitis is a serious disease.

CDC betrayed us by giving it a silly-sounding name in 1988 - CFS.  NIH allocates less than $5 per patient per year to study this disease - a pathetic amount.  After a report they commissioned from the Institute of Medicine came back last year, saying this was emphatically not a psychiatric disorder, and that NIH needed to spend much more money on it, we were promised more funding - but so far, haven't received anything above the usual $5-6 million.   See "Beyond Myalgic Encephalomyelitis".

We came back with private research initiatives, funded by cash-strapped patients and their families, and more good biomedical research is being published than ever before.  The whole concept of what "CFS" is, silly sounding name and all, is undergoing a transformation. And for the first time in my memory, clinicians and researchers have agreed on a definition - the Canadian Consensus Criteria, updated with current research.  There are excellent research studies going on at Stanford, Columbia, and Cornell right now - but they get little, if any, NIH funding.  Even Ron Davis, the Stanford scientist responsible for the human genome project, can't get funding out of NIH for this disease.

The main study behind the government's prescription of psychiatric counseling and graded exercise, the PACE trial, has been exposed as a giant boondoggle - but at the moment, the scientific  journal that published it, The Lancet, the institutions behind it in the UK, and the UK government, are still pretending they don't know how deeply flawed it was.  See PACE: The research that sparked a patient rebellion and changed medicine.

Perhaps more important, why don't people outside our community - people in the media, in government, our doctors, our neighbors, our employers - why don't they know that there is a growing epidemic of a severe, life-altering and in some cases life-taking disease that CDC and NIH are keeping under wraps?  I have friends who were teenagers when they got sick, and are now in their 40s. They did not get to marry their soulmate like I did.  They did not go to college or have a career.  They did not have children or grandchildren (I have two grandchildren now).  I was lucky compared to them.

There are patients who are even worse than I was - completely bedridden, on feeding tubes.  See The 25% ME Group and the story of Whitney Dafoe in the Washington Post.

They can barely afford to live from day to day.  Few can afford the testing I have had - if they can afford it, they can't get anyplace that does it.  They go untreated, hidden, silenced.

I have lost too many friends to this disease; we have lost young people to this disease.  The viruses can get into your heart muscle; they can get into your liver.  Patients die of rare cancers as well.  And then there are the suicides.

There has been a new series of outbreaks in the past five years.  Look at those you love, and if you care for them - whether or not you care about us - do something.  Because they could be the next victims.

Thank you for reading.

The IOM Report on ME/CFS (SEID)

This blog started out as comments on other people's blogs on the report of the Institute of Medicine (IOM)'s new definition for "ME/CFS" and the new name chosen by this committee - SEID (Systemic Exertion Intolerance Disease).  Specifically, this began as a comment to Erica Verillo's thoughtful essay, which can be read here:
http://cfstreatment.blogspot.nl/2015/02/the-iom-report-good-bad-and-absolutely.html

The full IOM report itself is available here:
http://books.nap.edu/openbook.php?record_id=19012
(You can download and save it in PDF form for free, but that may require registering as if you were going to buy it, then downloading it for free when given that option.  They are charging $50 for the report in hard copy.)

And a new physician's guideline written by the IOM is available and can be downloaded here:
http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf

I think the IOM Committee meant well, but I think they failed.

The CFSAC (CFS Advisory Committee) is a Congressionally mandated committee charged with advising the Secretary of Health and Human Services (HHS) on issues related to CFS.  In 2004, CFSAC asked that HHS adopt the new Canadian Consensus Criteria (2003), created by a committee of clinicians - many from the US.  They were ignored.  They kept asking.

A decade later, CFSAC asked HHS to sponsor an OPEN workshop of EXPERTS to UPDATE THE CCC.  Instead, HHS paid the IOM $1 million to put together a committee to update the name and definition - but say nothing about treatment.  The committee was about half specialist, half amateur.

Why did HHS fail to take the advice of the committee charged by Congress to give it advice - CFSAC?  The first failure of the IOM committee was in its very existence.  HHS should have listened to CFSAC.

The second great flaw is the failure to discuss treatments.  That was mandated in the instructions to the IOM.  I wonder why.

British psychiatrists have been recommending a combination of Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET) for two decades, and so does the US CDC.  It does not really matter what you call it - if it can be cured by CBT/GET, quite obviously it's not really a physiological disorder.

If the committee's conclusions are accurate, CBT is a waste of time as a "cure." In fact, there is a short discussion of the literature on CBT at the very end of the report, in Appendix C on disability, which concludes there is no research providing evidence that CBT can get patients back to work.  But that was not in the body of the report, nor the summary provided the media, nor in the physician's guide that the IOM just released.

If the committee's conclusions are accurate, Graded Exercise Therapy can be downright dangerous - especially if administered as a "cure" by those who do not understand the disease.  And especially if in tandem with psychotherapy urging the patient to ignore what the body is saying and adopt a "positive attitude."  Post-exertional worsening of symptoms is a hallmark of this disease - that's why they named it SEID (Systemic Exertion Intolerance Disease).

But the committee was FORBIDDEN to discuss treatments, and there is nothing to keep CDC and others from continuing to recommend it.  Acquiescing to this "remit" will haunt the committee
forever, and it is the most serious problem with the report.  But it will make insurance companies happy.

Now for more specific comments:

1.  The name SEID (Systemic Exertion Intolerance Disease) is a train wreck.  Yes, they gave us "disease" instead of "syndrome" - but I doubt it will make much difference.  "Exertion intolerance" will be viewed by most people - including most in the medical profession - as a fancy way to say CFS.  And if you had any doubts, in the flow chart to assist diagnosis that is in both the report and the physician's guideline, the top and defining symptom is ... "Fatigue." (P. 7 of the full IOM report)

If you had any more doubts, the report criticizes AND REJECTS numerous studies because the researchers used healthy people as controls instead of people with "other fatiguing" conditions, or diseases, or complexes, or syndromes, or ... Well, you get the idea.  Last time I looked, the correct methodology is to contrast the study group with a control approximating the normal population as best as possible.  Why add this new criteria - particularly when NOWHERE in this report is there a list of so-called "fatiguing conditions"?

Yes, for a first pass at a diagnosis, if your definition begins with "fatigue" you want to make sure you are distinguishing the fatigue from this disease from fatigue for other reasons.  But ... I thought the new definition didn't focus on fatigue as the prime symptom.  Guess I was wrong  about that.

And if there are studies that have shown statistically significant differences from a sample of the normal population, a scientific report should have included them, whether or not they also used a control group of patients with "other fatiguing conditions."  This is a major failing.

The definition and the summary were failures also because you have to read the full report to see that
they recommend CPET scores to measure PEM, NK cell function to measure the severity of the condition, and a tilt-table test (TTT) or an in-office substitute to test for autonomic dysfunction.  Instead, there is a plethora of subjective questionnaires offered.

I do give the physician's guide credit for mentioning these, but in the end they suggest ... Subjective questionnaires for diagnosis.

It would make an enormous difference in both the perception, and the real world treatment, of patients with this disease if objective tests were emphasized.  But they waffled at the end.  I guess they didn't want to tangle with insurance companies.

2.  The committee should have included a list of diseases that need to be ruled out because it is important for them to be treated.  That includes Hep C, congestive heart failure, hypothyroidism, hypocortisolism, primary mood disorders, and numerous others.  However ...

3.  Once such a condition is recognized and treated, if the patient continues to meet the definition for the disease, they can still get a diagnosis.  Skipping that interim step will do the patients no favors, and possibly result in numerous misdiagnoses.

4.  Once treated, however, most conditions should not be exclusionary.  The committee is correct in this - just as a person can have both cancer and hypothyroidism, so too can a patient have both "ME/CFS (SEID)" and hypothyroidism.  This is a particularly pertinent example, because research that did not make it into the report provides evidence many patients with a diagnosis of ME or CFS have a chronic viral infection.  It is known that many herpesvirus infections (EBV, CMV, HHV-6A) can cause Hashimoto's hypothyroidism.  To exclude Hashimoto's (a condition where your own antibodies attack your thyroid) would lead to the exclusion of many patients with chronic viral infections.

5.  Instead of offering an unbiased survey of the evidence of chronic viral infections in ME and CFS, the committee stuck to the government line that there are no chronic viral infections except in AIDS.  But if you start out by excluding evidence to the contrary, you have created a tautology.  Surely they could have examined that evidence, which goes beyond EBV, but added their OPINION - which is what it is - that the disease is not caused by chronic viral infections.  Perhaps they should go back and read Popper again on falsifiability and the inability to use statistics to disprove a hypothesis for which it is acknowledged there is evidence, but it is insufficient evidence.

6.  Some have called for NMH/POTS and Ehlers-Danlos Syndrome (a hereditary connective tissue disorder) to be exclusionary.  But - as the committee correctly noted - there is significant evidence that NMH/POTS and CFS (Fukuda 1994), and NMH/POTS and CCC are correlated.  Again, you can treat the NMH/POTS but the patient will still have the disease.  The symptoms will be a bit better, however, and it is irresponsible not to try to do something about it.  The literature in the correlation goes back to Ramsay's definition of M.E., and a 1995 article in JAMA (the Journal of the American Medical Association).  Newer research shows Ehlers-Danlos correlates with NMH/POTS.

7.  A patient with depression or anxiety should be treated for depression or anxiety - but if they have the disease, they will still be sick.  Furthermore, the incidence of secondary depression is similar to that in MS patients.  Of course these patients should be treated!

However, major mood disorders and depression/anxiety are the elephant in the room for this disease.  While they are exclusionary for almost every other diagnostic criteria - they are NOT excluded for what is called the "Oxford definition," which consists of six months of debilitating fatigue not caused by a physiological disorder (and was curiously missing from the list of extant definitions.). The Oxford definition underlies a parallel universe of psychiatric papers as numerous as the research on physiological aspects of the disease.  These psychiatrists generally do not mention the physiological evidence in their work, and they frequently cite each other, so a novice who is only aware of that research will only know about ... The Oxford definition and the so-called "biopsychosocial" school of British psychiatry.

These psychiatrists peddle CBT/GET as THE cure for what they call "CFS/ME."  The CDC's website throws in SSRIs and sleeping pills, but basically echoes the British psychiatric version.  That is not a coincidence: leading lights of the British school have all advised the CDC frequently on "CFS" (and often on GWI as well):  Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder.

Once again, the failure of the IOM report to directly address the parallel literature in psychiatry, and the problems with CBT and GET, can only be viewed as a great failure.  It was nice for them to say "ME/CFS SEID" is not neurasthenia (a diagnosis favored by the British psychiatrists) - but it's a day late and a dollar short.

Most recently, a committee including British "CFS/ME" expert Michael Sharpe succeeded in getting a new condition called "Somatic Symptom Disorder" placed in the new DSM-5, the diagnostic manual of American psychiatry.  The definition looks remarkably like a definition for CFS.  It starts with complaining about fatigue.  And one of the "symptoms" is complaining of four or more physical symptoms!   If you weren't careful, a cancer patient could get thrown in this bin.

Therefore, had the committee not been so naïve (I do hope that is the reason), they would have made a strong statement that this disease IS NOT SOMATIC SYMPTOM DISORDER, and IS NOT A SOMATICIZING DISORDER, period.  The failure to do so is enormous in the real world of misdiagnoses, mistreatments, patients thrown into mental hospitals against their will, and young people sent to foster care because their "overbearing" parents (and perhaps a "misguided specialist") diagnosed the child with ME or CFS.

8.  We ALL - myself included - would prefer for the time being they name the disease after a key researcher such as Melvin Ramsay, or a patient, such as the late, brilliant young Alison Hunter.  CDC insists that scientists don't do that any more.  So maybe we patients should.

9.  When it comes to the disease M.E., which is a distinct illness diagnosed outside the US since 1955 and recognized as neurological by WHO since 1969, the committee did not seem to know what it was.  They seemed to think it was a synonym for CFS, just another choice of a name.  It is not, and it is not the committee's business to dismiss it.  They were charged with examining ME/CFS, but as Leonard Jason eloquently explained in his latest article, that is also a different condition with its own name.  (The CCC uses ME/CFS throughout because Canada's version of ICD-10, called ICD-10-CA, placed CFS and M.E. together in the tabular version of ICD-10-CA, adopted by Canada in 2002.). At any rate, I am giving the committee the benefit of the doubt and hoping that these were just typos:

-  The committee stated that M.E. and CFS are coded separately in WHO's ICD-10 (p. 27 of the full IOM report).  That's not so.  That is true of the US version of ICD-10, called ICD-10-CM.  It is a major error - period - an error of FACT.  ICD-10 codes M.E. in G93.3 in the chapter on neurological disorders (as they have since 1969).  If you look at the index (unfortunately unavailable online, but I have a xerox of the appropriate page in the printed index), CFS is also coded to G93.3.  Furthermore, André l'Hours of WHO frequently responded in writing to queries from British Parliament as to the proper coding of CFS, stating it belonged in G93.3.  (This was during a period when the British psychiatrists were insisting "CFS" was actually neurasthenia and should be coded under psychiatry.).  So the committee was FACTUALLY WRONG in stating that WHO's ICD-10 places M.E. and CFS in two different codes.

To be accurate, the US's ICD-10-CM, a clinical modification of ICD-10 due to go into effect in fall 2015, as well as ICD-9-CM, still in effect in the US, both place M.E. under neurology and CFS under "vague signs and symptoms."  But that is ONLY in the U.S.  It is not the world.
 The rest of the world has been using ICD-10 for the past 1-2 decades while the US was still stuck on ICD-9-CM.  CFS was never coded in WHO's ICD-9 because shortly after it was adopted on the US, WHO completed their conversion to ICD-10.

-   The committee also stated that the Holmes (1988) article introducing CFS and its first definition acknowledged the existence of M.E. (P. 29 of the full IOM report).  It did not.  You will not find M.E. in the body or the footnotes of the Holmes article.

These were important because if the option of diagnosing M.E. - a separate diagnosis in the US - if the option of diagnosing M.E. had been available and known to the physicians working with cluster outbreaks, they might have chosen THAT diagnosis as more appropriate.  The definition of M.E. in Melvin Ramsay's 1986 textbook can be found here (formatted as we are used to seeing definitions, but otherwise unaltered):
http://www.cfids-me.org/ramsay86.html

10.  It bears repeating here that another major failing of the report was the frequent criticism of existing studies because they used healthy patients as controls.  That is the usual thing to do in medicine.  Isn't it?  But as much as they said they wanted to downplay fatigue, they insisted that studies of the disease should have compared patients to those with "other fatiguing disorders".  They said this about a dozen times, but never listed what they had in mind by "other fatiguing disorders."  So once again, methinks they do protest too much.

11.  In part because of (10), and in part because of a continuing prejudice in the medical profession against the possibility that a person can have a chronic viral infection (except for AIDS patients), all of the literature on pathogens (except EBV as a possible trigger) and most of the literature on immune system dysfunction was ignored.  Did not appear in the report.  This amounts to censorship - seriously so, because a finding that a patient has an active viral infection or a serious immune defect can lead to TREATMENT, and in the end, treatment is what these patients need most.  Patients do not all test positive for the same conditions (mostly viruses), but there is a considerable body of evidence on chronic infection and this disease.  After all, this disease was originally named atypical polio, and it first came to the attention of the public because of a series of cluster outbreaks around the US in the mid-1980s.
The list of pathogens is long, and, to repeat, patients do not all have the same combination:  enteroviruses in general, Coxsackie in specific; Human herpesviruses (HHVs):  EBV (Epstein-Barr Virus, mono, HHV-4), CMV (HHV-5), HHV-6 Variant A, HHV-7; chlamydia pneumonae; parvovirus; adenovirus; and others.  The evidence is there, but because there is so little funding, they tend to be small studies.  That they are small, however, cannot be taken to mean they are inaccurate (get your Popper out again, guys).  It just means we need more money for research.  I think I said that before.

12.  There is so much else that is missing - the literature on mitochondria, toxic assaults including molds, and many others.  I can't go into them all here - but THEY should have.  If there was enough time, they should have said so and still listed the bibliography.

------------------------------------

Sadly, I don't think we can do much about this.  It was suggested that we "act up" (a reference to AIDS activism).  I think that suggestion was well-meaning, but again, naïve.  Several specialists who treat both AIDS and CFS have said that CFS patients are, in general, as sick as AIDS patients are in the last two months of life.  The people who were "acting up" were not THOSE patients - they were often the healthy friends and loved ones of dying AIDS patients.

We can't occupy the Capitol building or the Stock Exchange because we can't take the chance of going to jail.  For a person with this condition, that could be a medical disaster.  So even those who want us to demonstrate are ignoring the nature of this disease as a disability.

(I could also add that AIDS patients did not have to contend with the Patriot Act, or a nation hardened to demonstrations.)

Nobody wanted to pay much attention to us advocates when we wanted to dump this whole exercise - for that matter, nobody paid attention to the Congressionally mandated CFSAC or a letter signed by nearly 50 specialists.  I don't think they are going to pay much attention to us now.

The US is in the process of switching over from ICD-9-CM to ICD-10-CM this fall.  As a result, there is a coding freeze in place.  Unless ordered from above within the government, SEID cannot get a code authorized until October 2016.

So why go through the exercise?  Well, it seems to have effectively stymied CFSAC's efforts to have the government sponsor a workshop of specialists to revise the CCC and then for the government to adopt it.

We could always put together our OWN committee and have the results published in a peer-reviewed journal.  Of course, the US government may ignore that - but perhaps clinicians and researchers won't.  There is a precedent - the Reeves definition (2006) has been ignored by everybody except
CDC, and even CDC uses the Jason prevalence rates on its website, not Reeves'.

In fact, DePaul specialist Leonard Jason just published a new clinical definition that is (in my opinion) better than the IOM's:
http://www.tandfonline.com/doi/abs/10.1080/21642850.2015.1014489

But I think the next move will have to come from the US federal government.

If CDC revamps its website and "toolkit" and gets rid of their recommendation of CBT, GET, antidepressants and sleep aids, I will eat my words and consider the IOM report a success.

If NIH increases spending on our disease from $6 million a year (in the bottom five of all conditions funded by NIH) to something more commensurate with the severity and prevalence (one million adult Americans) of this disease - say, $100 million (still much lower than the spending for MS), I will eat my words and consider the IOM report a success.

If, as I suspect, neither agency will amend their ways with regards to this disease, then all the good intentions in the world won't help.  The IOM Report, $1million and the committee's time and effort, will all have been a terrible waste.

The week before the rollout of the IOM report, a lovely young woman named Vanessa Li took her own life because she continued to suffer dramatically from the disease and she saw no hope for a change.

Karina Hansen, only 25, has spent the past two years imprisoned in a Danish psychiatric asylum for the sin of having a diagnosis of M.E. and continues to languish there, unable to see her family.

By the report's own admission, a quarter of a million Americans are bedridden or housebound right now as a result of this disease.

We don't need prevarication - we need URGENT ACTION.

What will it take to get that?

Mary Schweitzer, Ph.D.
Incline Village, NV
25 February 2015