tag:blogger.com,1999:blog-4895604594896814289.post7736377487911872898..comments2023-08-20T01:37:48.791-07:00Comments on CFS Patient Advocate: IACFS/ME - and then Mission Deloresconsuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-4895604594896814289.post-66249307876020204122014-04-04T13:04:20.920-07:002014-04-04T13:04:20.920-07:00"Begin an exercise program in which you gradu..."Begin an exercise program in which you gradually increase your activity level. This can effectively reduce the severity of your symptoms."<br /><br />"Cognitive behavioral therapy (CBT). CBT is a type of psychotherapy. It helps you identify and change negative thoughts and behaviors. CBT can reduce symptoms."<br /><br />The above ran in this column on March 21st, during the conference.<br /><br />http://www.montereyherald.com/health/ci_25393450/ask-dr-k-coping-chronic-fatigue-syndrome<br /><br />So he said one thing at the conference, yet that ran under his byline in newspapers all across the country.<br /><br />Jay SperoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-28629088955260329352014-04-02T20:33:50.852-07:002014-04-02T20:33:50.852-07:00Patricia:
Dr. Komaroff stressed that CBT does NOT...Patricia:<br /><br />Dr. Komaroff stressed that CBT does NOT help ME/CFS. He said a study found it made 26% of people worse and only 7.4% better.<br />GET also was denigrated by one or more of presenters at patient conference.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-62417439755280526322014-03-30T17:10:14.785-07:002014-03-30T17:10:14.785-07:00Chris,
Thanks for the compliment (I like the way y...Chris,<br />Thanks for the compliment (I like the way you write, too), and thanks for attending the conference and communicating your concerns about it. I sometimes find myself falling into steep depressions at IACFS conferences and there are numerous reasons why that might be, but mostly frustration with the pace of this particular group of scientists, the half-spoken and unspoken truths that float by in the atmosphere, as if fear of not-getting-government-grants has taken over as its own disease to vie with M.E.; or a giant like Paul Cheney being relegated to poster sessions (because he displeases the CDC?); and more. I think you focused on an important issue, however: the continued failure to study the most sick. Don't know if you attended the session on "difficult patients," a fixed feature of this conference. Instead of the patients you describe, the "difficult" patients seemed rather mild, and one of them was classed as difficult for the reason that he was "angry." This generated a lot of amusing discussion including one doctor who said she had worked on a psych ward and advised the doctors in the audience to get five people involved, two for the legs, two for the arms, and one for the head. Blowing off steam, I suppose, but chatter that is such a far cry from a truly "difficult" patient--one who cannot move, cannot eat, cannot bear the weight of a sheet upon her body. Everyone knows these patients exist in significant numbers and your observation that IACFS acts as if it simply cannot face or examine their reality, rings true. Another factor in play may be CDC's insistence that M.E. is actually a lot of little "subsets" (reductionism) instead of a major disease with a continuum of severity (as is a widely recognized feature of most diseases) the most seriously ill are considered, sotto voce, to have a different disease. Or, they are assumed to be unrelated to the patients these doctors see day to day. And yet, common sense suggests they could tell us the most.<br />Agreed: Dan Peterson's raucous "IACFS, past, present, future" extemporaneous speech was both a gracious gesture to many and oftentimes, a hoot.<br />Lastly: utterly tragic that CDC was ever involved in the discovery process.<br />Hillary Johnson <br /> Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-7374036261340694512014-03-30T16:56:12.490-07:002014-03-30T16:56:12.490-07:00I believe the unwillingness of governments to fund...I believe the unwillingness of governments to fund M.E. research drives the lack of research on the severely ill. Give out the $140 million in grants that MS gets from NIH this year and there will be plenty of research on severe illness. Or how about the $2.2 billion Dr. Fauci will spend on HIV this year alone?Deborahhttp://nanoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-66936312895789967172014-03-28T10:18:34.382-07:002014-03-28T10:18:34.382-07:00I appreciate that you took the time and interest t...I appreciate that you took the time and interest to go to this conference, observe and report. As a ME sufferer-thankfully not yet housebound- I have recently been much more active as my own advocate. For me, this consists of reading as much as I can, when I can, on the research being done, blogs by sufferers and participating in the blog HealClick. I re-blog any items I feel will give others a glimpse into this devastating illness. It may not be much, but it is better than nothing.<br /><br />Keep up the good work - I wish you and your daughter the best. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-36609135070858297162014-03-27T12:17:18.406-07:002014-03-27T12:17:18.406-07:00Love seeing different perspectives. I was there, b...Love seeing different perspectives. I was there, but due to my own illness, I only saw about a third of the presentations. Wasn't there a section of the program to discuss the severely ill? I know I missed it. But I thought I saw it on the agenda. Also, as you know, Pridgen is from Alabama. I invited him to go. He said his research results wouldn't be finished yet and he didn't want to present anything until the study is published. I encouraged him to go to learn from the others, broaden his knowledge base. He said everything will change with his study results. He said Bateman, whose clinic is participating in the trial, would be there. Tina Tidmorehttps://www.blogger.com/profile/13980022042239573832noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-37798724258048397342014-03-26T20:13:02.303-07:002014-03-26T20:13:02.303-07:00A different Anonymous: Better yet, bring the test...A different Anonymous: Better yet, bring the testing to the patients... wheelchairs and hospital beds (and all the environmental stimulation associated with that) would induce severe and possibly life-threatening relapse in patients who are already severely ill. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-52894946084525514932014-03-26T17:50:11.307-07:002014-03-26T17:50:11.307-07:00get the wheel chairs and hospital beds lined up an...get the wheel chairs and hospital beds lined up and loaded with the severely ill...I know it would be very very difficult but these folks need to be seen by the people studying this disease. We must not be so passive!!! Yell ..scream ..fight god dam it!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-55418344438429551042014-03-26T16:40:36.795-07:002014-03-26T16:40:36.795-07:00What I am most concerned about now is that some do...What I am most concerned about now is that some doctors, such as Komaroff, Lapp and Klimas, with the assistance of so-called "patient" groups like CAA and PANDORA, are now in the process of convincing the government and our medical professionals that what M.E. patients really need--and it will be applied to all of us--is CBT and GET. Therapy and exercise may help someone who suffers mildly from M.E., but it would kill me--and thousands of other severe sufferers.<br /><br />Patricia CarterWildaisyhttps://www.blogger.com/profile/03387587496317619866noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-47279808359667056952014-03-26T16:31:17.753-07:002014-03-26T16:31:17.753-07:00As a person who is severely affected by M.E., I am...As a person who is severely affected by M.E., I am cheering from my bed! Someone (you!) has noticed that I and other severe sufferers exist! We are hidden, isolated in our beds an no one even admits that we exist. I do not understand this avoidance of severely-affected patients in M.E. In other illnesses, the severely affected are the first ones studied--to see the most severe effects of the illness. But in M.E., we are hidden away and ignored, as though we are too horrible to contemplate. I agree with you, this means something. I think it means that our very existence engenders that overwhelming fear that something this life-destroying can happen; and if it can happen to us, perhaps it can happen to the readers' and researchers' and clinicians' families and friends too. I think we are avoided because we are examples of what can and does happen, and people simply do not want to think about it because then they might have to consider that it can happen to them and to their loved ones.<br /><br />Patricia CarterWildaisyhttps://www.blogger.com/profile/03387587496317619866noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-16205722286107018192014-03-26T11:26:52.449-07:002014-03-26T11:26:52.449-07:00Donations to Dr Chia's research should be made...Donations to Dr Chia's research should be made to EV Med Research, not to the EV Foundation. I contacted his office directly to get donation info, Andrew wrote me a very nice e-mail in reply stating that donations would directly fund the reagents needed to further the work. The lab is also looking to fill for a number of positions from scientist to technician <br /><br />http://www.evmedresearch.com/<br /><br />EVMED Research<br />25332 Narbonne Ave<br />Suite 170<br />Lomita CA 90717.<br /><br />Office (310) 534-9700<br />Fax (310) 534-9701<br /><br />Generation Information<br />info@evmedresearch.com<br /><br />Diagnostics<br />diagnostics@evmedresearch.com<br /><br />Careers<br />careers@evmedresearch.com<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-33180520850685551702014-03-26T09:05:11.860-07:002014-03-26T09:05:11.860-07:00Thank you for your interesting post on IACFS, I li...Thank you for your interesting post on IACFS, I lived in San Fran/the Bay Area off and on in early-mid 90s, so this resonates for me in more ways than one. At that time, my brother was doing his PhD at Stanford and had med student friends, also at Stanford, they regarded me with curiosity, the Scottish girl with the strange illness. None of them had heard of actual 'ME' - the Lake Tahoe 'mystery illness' was sometimes vaguely mentioned, but not really in connection with my own illness, which had been triggered by Coxsackie b4 virus in early 1980s in west of Scotland. I was diagnosed in early 1984 by neurologist Prof Peter Behan, with what is now known as Ramsay-defined ME. I was severely ill and 30 years on I am moderate with severe dips. It is so gratifying to know of Dr Montoya's research. And I am of course interested in Dr Chia because of his enteroviral work. I am so very pleased that Invest in ME got an award, their work is sterling and gives hope to those of us in UK.nmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.com