I looked up an old email-it's supposed to be a community pain and neuroinflammation conference. Still looking for info if anyone has it! Thanks Cort for everything you do to keep us updated!I certainly hope there is one!
Medscape isn't just any online medical resource; it's a highly respected website aimed at medical professionals. How sweet it's been then to see Miriam Tucker blast out three articles on the IACFS/ME Conference thus far.
Post-Exertional Malaise Takes Center Stage
[fright]View attachment 2215 [/fright]Tucker, an astute reporter who's covered chronic fatigue syndrome several times before, probably knocked many medical doctors right between the eyes in her first article when she asserted that post-exertional malaise, not fatigue, was the core symptom of the disease.
Notice how Tucker completely recontextualizes this disease in her first paragraph by mentioning PEM first, and then speaking about ME/CFS in light of it.
Tucker buttressed her claim that exertion and its effects are the key problems with findings from studies presented at the conference indicating that exercise alters cytokine levels, impairs cognition, alters brain functioning, increases lactate levels and results in inhibited heart rate increases.
Exercise studies are finally coming into their own in chronic fatigue syndrome; in no other disease do they hold such a pivotal place in explaining what is going on. That fact, alone, should give many naysayers pause.
Tucker's next paper pointed out that the more than 100 papers presented at the conference substantiate the assertion that something has gone wrong biologically in this disease. Harvard professor, Tony Komaroff, sounded a note of vindication when he referred, at the end of the conference, to Dr. Montoya's cytokine paper, stating:
Researchers and doctors, Komaroff asserted, will find that chronic fatigue syndrome (ME/CFS) can stand on its own biologically if they'll just check out the literature.
Tucker rounded off her IACFS/ME review with immune studies from Dr. Montoya, a potential immune diagnostic panel from Dr. De Meirleir, brain imaging studies and Dr. Hanson's metabolomic study suggesting that a hypometabolic state exists in ME/CFS.
Immune Drugs Having Impact
Her coup de grace came, however, I felt, in her latest article "Immune-Modulating Agents Eyed for 'Chronic Fatigue Syndrome'" where she introduced the physician-heavy Medscape audience to the work of two Norwegian oncologists, Drs. Fluge and Mella.
Many eyes must have widened considerably as doctors learned these two oncologists have found success with heavy-duty chemotherapy/autoimmune drugs such as Rituximab or cyclophosphamide. Those eyes may have widened further when they learned that the responders, with their long lag times between treatment and effect, are responding as if they had an autoimmune disease.
[fright]View attachment 2216 [/fright]Findings like these chip away at the belief systems that have pervaded this disease in too many doctors' eyes for too many years.
Fluge's metabolomic results suggesting that
only underscore the perhaps unique exertional problems in this disease.
Finally, Tucker noted that Mella suggested that treatments for this puzzling disease may not be as far off as some might think.
My favorite part of Tucker's piece, though, came in a comment from Leopold Stengyl, a health care provider:
It's getting harder and harder for doctors and researchers to dismiss ME/CFS.
Coming up shortly - Health Rising begins its survey of the co
Does anyone know the details of an upcoming Spring conference?
taking nothing away from this conference, but it occurs to me -- it may amount to "preaching to the choir". Doctors attending this conference are already involved or at least interested. We won't reach the eye rollers at this conference! Maybe -- present cardiac implications at a heart ASSOC conference, immune aspects and success with chemo to rheumatologist or infectious disease conferences, maybe mitochondrial issues to internists and family practice oriented conferences? We need to reach the guys who roll their eyes at us, hand us a scrip for cymbalta, or tell us to exercise more.........we need to reach all the Drs for all the affected systems and really pique their interest......maybe present a quiz of symptoms and test results and new treatments like chemo and vagus nerve stimulation - and ask them to solve the puzzle.....
She's a journalist who's done some great work on ME/CFS. I met her at a Ron Davis fundraiser for the Severe ME/CFS patient project last year.
She did this story on Whitney Dafoe for the Washington Post - https://www.washingtonpost.com/nati...d6189c-4041-11e5-8d45-d815146f81fa_story.html
She did this story last year for Medscape on Wrong Name, Real Illness
2015 - on the IOM report - Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It
2015 - on the announcement that ME/CFS will get more funding - Chronic Fatigue Syndrome Research Gains Funding, And Controversy
In 2014 on the need for a new name - http://www.cpr.org/news/npr-story/does-chronic-fatigue-syndrome-need-new-name