tag:blogger.com,1999:blog-1345573145957924958.post3163632573200889368..comments2024-03-13T09:08:55.969-07:00Comments on Slightly Alive: Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFSMary Schweitzerhttp://www.blogger.com/profile/11583106682242141031noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-1345573145957924958.post-15417808806602753332016-04-26T10:28:35.170-07:002016-04-26T10:28:35.170-07:00Hello Mary, I will be sad if you back out of you k...Hello Mary, I will be sad if you back out of you know where. I will email you directly. Barbara<br />SOCShttps://www.blogger.com/profile/02620430767087714105noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-19162223938890728432016-04-07T20:53:09.270-07:002016-04-07T20:53:09.270-07:00I'm sorry - advertisements are not permitted o...I'm sorry - advertisements are not permitted on this website. I had to delete your post.Mary Schweitzerhttps://www.blogger.com/profile/11583106682242141031noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-60579633115356229762016-04-06T21:44:11.512-07:002016-04-06T21:44:11.512-07:00This comment has been removed by a blog administrator.Anonymoushttps://www.blogger.com/profile/18366394534156586032noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-16567411439268869572016-03-27T13:19:22.937-07:002016-03-27T13:19:22.937-07:00Thanks, Mary - this is a brilliant letter. Thanks, Mary - this is a brilliant letter. Elizabethhttps://www.blogger.com/profile/10518486144933696028noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-44197518417159906322016-03-19T22:11:43.059-07:002016-03-19T22:11:43.059-07:00What a great and clear explanation about what is h...What a great and clear explanation about what is happening here, Mary. I have CFS, Sjögren and Endometriosis and of course there are biological causes. I feel insulted by these doctors that probably are more interested in their prestigious career than helping the patients. Amaranta Arcadia Castillo Gómezhttps://www.blogger.com/profile/00455524723688072689noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-16090591837456526622016-03-18T22:45:56.496-07:002016-03-18T22:45:56.496-07:00This was at (I think) the first - or only - public...This was at (I think) the first - or only - public IOM meeting. She described the multisite study, and said that they are having trouble getting enough patients, but that's okay because they'll just fill in with Georgia patients. That's paraphrased, but I know she said it because I did a double-take.Mary Schweitzerhttps://www.blogger.com/profile/11583106682242141031noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-33675985378869650502016-03-18T22:40:36.866-07:002016-03-18T22:40:36.866-07:00Mary, please do you have more info about this -
&...Mary, please do you have more info about this -<br /><br />"Dr. Unger has said that they will include the Georgia study patients (diagnosed using Reeves) in the multisite study"Anonymoushttps://www.blogger.com/profile/06388400843976123103noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-72667241849197126492016-03-18T17:53:51.297-07:002016-03-18T17:53:51.297-07:00Sorry you don't get it, Cort.
Please underst...Sorry you don't get it, Cort. <br /><br />Please understand how frustrating I find this. I believe Dr. Collins when he says he wants to do a good in-house study on ME/CFS. We are lucky to have someone of the caliber of Dr. Nath involved in the project. However, any research program is only as good as each component - and the data set is a very important component.<br /><br />The issue here is that there will only be 40 patients, and according to NIH, the Lead Associate Investigator will have a say in who those patients are. "The Lead Associate Investigator (LAI) will ... work with the CDC and the NIH ME/CFS executive committee to coordinate screening of potential participants for the study."<br /><br />http://mecfs.ctss.nih.gov/faq.html<br /><br />Dr. Unger has said that they will include the Georgia study patients (diagnosed using Reeves) in the multisite study, which already concerned me. I am now further concerned that the cited article discussed the Reeves Definition without calling it the Reeves Definition. That unfortunately leaves us in the position of needing them to say specifically that THE QUESTIONNAIRES FORMERLY CALLED THE REEVES DEFINITION will not be used in the NIH study - which is indeed ridiculous, but there it is. Unger is another who will have final say in which patients are accepted for the study.<br /><br />I have taught statistics on the graduate level. I am deeply concerned that there will only be 40 patients. If any of those 40 patients do not actually have ME/CFS, it will only make matters worse.<br /><br />We have previously been in a situation where the people in charge of our disease at NIAID - including Dr. Fauci, head of NIAID since 1983 - were convinced it was psychosomatic (despite none of them having any training in psychiatry). My mother (then about 75), took me in my wheelchair took me to the first CFSCC meeting. Reeves started his presentation with a joke - he said "I'm going to make Tom Hennessy really happy - I'm going to say CFS is caused by a virus. [pause for effect] No I'm not. It's not caused by a virus." My mother whispered to me, "Did he just make a joke at the expense of a patient?" Yes, Mom, shh. Then she looked at the program. "Who's speaking," she asked. Dr. Reeves from CDC. "But it says here that he is in the Division of Viruses and Exanthums." Yep. "If he doesn't think it's caused by a virus, why is he still in charge of it?" BINGO! My 75-year-old Mom figured out in about 30 seconds what was wrong with that picture.<br /><br />Mom's 94 now - but I bet she'd figure out in 30 seconds what's wrong with this one, too.Mary Schweitzerhttps://www.blogger.com/profile/11583106682242141031noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-58707103772824544812016-03-18T17:48:17.280-07:002016-03-18T17:48:17.280-07:00This comment has been removed by the author.Mary Schweitzerhttps://www.blogger.com/profile/11583106682242141031noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-28824815305130757162016-03-18T16:02:23.347-07:002016-03-18T16:02:23.347-07:00Actually the blog was not by Sanjay Gupta. I hope ...Actually the blog was not by Sanjay Gupta. I hope patients are more involved. <br /><br />I would like to point out though, that this study is looking more deeply in the immune systems of ME/CFS patients than any to date, and that it is being lead by the NIH's expert on the effects of infection on the nervous system and the subject of most of this blog, Brian Walitt, is mostly a coordinator and is not doing any of the research. <br /><br />To even suggest that this study - which is not investigating somatoform illness IN ANY MANNER - and which is devoted to investigating the effects of infection on the immune system, brain, metabolic systems and autonomic nervous system - is going to drag patients back to "square one" is ludicrous. <br /><br />I'm sorry to use such an inflammatory term but the idea that it could do that is unfair, inaccurate and not at all helpful...<br /><br />Mary knows that the NIH has stated that the CCC criteria is going to be used. She knows that the NIH stated that the Reeves criteria are going to be used for their questionnaires only. She knows that most of the patients are going to come from ME/CFS experts in the multisite study. She knows the patients are going to have to have infectious onset....<br /><br />It doesn't seem to make any difference. <br /><br />I don't get it..<br /><br /> <br /><br />Corthttps://www.blogger.com/profile/01853580617414208249noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-61936095497310426512016-03-18T12:47:08.866-07:002016-03-18T12:47:08.866-07:00Thank you Mary for such a wonderful concise letter...Thank you Mary for such a wonderful concise letter that sums up the concerns of our community. Well written and easy to understand. And has just the right balance in terms of tone. Anonymoushttps://www.blogger.com/profile/14810990628209830134noreply@blogger.com