Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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MECongres in Amsterdam 26 Sept 2015

Discussion in 'General ME/CFS Discussion' started by mango, Oct 1, 2015.

  1. mango

    mango Senior Member

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    There was a ME congress in Amsterdam 26 Sept 2015
    http://www.mecongres.nl/

    Here are some tweets that I found interesting:

    Anil van der Zee: @MEcvsVereniging Thank u 4 the #MEcongres In Amsterdam 2day. Was the 1st biomedical congress ever, heard that it was an amazing succes #pwme
    Source: https://twitter.com/AnilvanderZee/status/647853680939696128

    Maija Haavisto https://twitter.com/DiamonDie:

    At AMC hospital for the #MECongres. (Huge hospital, whoa!) Cardiologist, prof. F.C. Visser just finished his talk. Byron Hyde next, yay.

    Prof F.C. Visser: #mecfs usually has a deteriorating course instead of stable. Yep. Could understand most of the Dutch talk. #MECongres

    Byron Hyde: This is a polio-like disease. It has two phases like polio. Deregulation of the cerebral cortex. #MECongres#mecfs

    Hyde: "If you haven't had a SPECT scan [of the brain] you're doing yourself injustice." Yes, the society does us injustice. #MEcongres

    Hyde: "I saw seven 'ME/CFS' patients here in the last two days, seven different diagnoses (e.g. EDS), only one actually had ME". #MEcongres

    Hyde: Stomach biopsy is very important, because you see the enterovirus infection so clearly there. #MECongres

    Hyde: Best treatment for #mecfs persons is to get them on disability to avoid stress that causes them massive damage!!! #MECongres

    Hyde: I earn my income from real estate, so I can see #mecfs patients for 1.5 days and actually lose money on it. #MEcongres

    Hyde lists many tests for exclusion e.g. ECHO cardiogram, carotid/transcranial doppler, clotting factors, thyroid ultrasound. #MEcongres

    Hyde: If thyroid volume on ultrasound is too low and patient has never taken thyroid meds, they have hypo, no matter blood tests. #MEcongres

    Hyde: ME clinics MUST be psychiatrist free areas. Have sometimes caused more injury to the patients than the illness. #mecfs#MECongres

    Hyde talked about a Swedish doctor who studied ME back in the late 1800s and early 1900s. Dr. Ivar Wickman. Very interesting! #MECongres

    I gave Byron Hyde my #mecfs treatment book. Very excited. :-> I have two of his books. #MECongres

    UK neuropsychiatrist Neil Harrison speaks about inflammation induced sickness behavior. TNF-alpha, IL-6 and IFN-alpha. #MECongres

    Harrison: Inflammation induced insula activity predicts fatigue. Neuroinflammation shows up in PET, fMRI, qMT. #MECongres

    Byron Hyde believes ME is only caused by enteroviruses, period. Neil Harrison thinks many different infectious agents causative. #MECongres

    Harrison: After infection/IFN people who are still sick (fatigue etc) no longer elevated cytokines. Activated microglia? #MECongres

    My question: What do you think about LDN to block TLR-4 and microglial activation? Harrison didn't really have an answer. #MECongres

    Belgian neuropsychiatrist A.M. Uyttersprot discussing Dx. Not so interesting, will close my laptop to save battery. Back in 1.5h. #MECongres

    Live tweeting from #MECongres resumes. Cardiologist Visser discussing OI and POTS. Tilt table test, cerebral blood flow etc.

    Visser: Near infrared spectroscopy (NIRS) shows huge arterial and venous oxygen saturation drop in #mecfs during tilt table test. #MECongres

    Visser: OI has tons of possible symptoms. E.g. nausea, shoulder and neck pain, dyspnea, exercise intolerance and blurry vision. #MECongres

    (Finnish neuro maagzine said POTS patients often have shoulder pain because they clench their shoulders to improve circulation.) #MECongres

    Visser uses clonidine, midodrine and fludrocortisone for OI. Salt and water intake also important, of course. #MECongres

    Visser: 3 types POTS: 1. hyperadrenergic, 2. venous pooling/hypovolemic, 3. autonomic small fiber neuropathy. #MECongres

    Visser: Treatments for different POTS types: 1. propranolol, clonidine. 2. fludrocortisone. 3. midodrine, pyridostigmine. #MECongres

    In people with #mecfs tilt table significantly lowers pain threshold, in healthy controls little effect <- central sensitization. #MECongres

    Visser believes e.g. acupuncture, LDN, cannabis, fentanyl, neuropathy pain drugs (antiepileptics, tricylics) useful for pain. #MECongres

    A woman asking a question from the audience was moved to tears speaking about her daughter's severe #mecfs. #MECongress

    Byron Hyde's second talk starting. He begins by greatly praising the presentations of Dr. Visser and Dr. Harrison. #MECongres

    Hyde talks about the current enterovirus epidemic which has caused some cases of paralysis -> more research into enteroviruses. #MECongres

    Hyde talks about EDS, especially EDS3. He's "diagnosing" people in the audience. (But all #mecfs patients have these problems.) #MECongres

    Hyde talks about aerotoxic syndrome, pilots and flight attendants affected by a neurotoxin used in plane motors. #MECongres

    Hyde: Case study: woman diagnosed as CFS in top US hospital, 6 weeks there. Reality: carotid arteries almost completely occluded. #MECongres

    Hyde: Physical examination should never last less than 1 hour. #MECongres

    Hyde: Don't stop testing after 1 diagnosis. I've had patients with over 20 pathologies. #MECongres (Yes!)

    Hyde: 47 doctors had missed that a boy had massively swollen tonsils, because no one had told him to say "aaah". #MECongres

    Nigel Speight starting his talk about pediatric #mecfs and severe ME. His youngest patient has been 18 months. #MECongres

    My brain and laptop battery are both shutting down, so live tweets may cease, I try to tweet afterwards at home. #MECongres

    Home from #MECongres. Great conference! Well organized, great speakers (Byron Hyde was amazing!), super nice people (e.g. @Gooische_Vrouw).

    I could understand two of the three Dutch presentations well, despite almost falling asleep... So a few more tweets will follow. #MECongres

    In Speight's experience children with #mecfs often get well even if they're severely ill (e.g. tubefed and stuff). #MECongres

    Many kids get better without any treatment, as long as you keep psychs and physios away from them. IVIG helpful for severely ill. #MECongres

    Dietitian C. Tobback talked about food intolerances (and a bit about deficiencies). Esp. FODMAP and histamine intolerances. #MECongres

    Tobback finds histamine intolerance common in #mecfs, symptoms can be severe and elicited by very small amounts of food. #MECongres

    Magnesium and vitamin B6 (especially in active form of P-5-P) can help h. intolerance. Stress, PMS make intolerances worse. #MECongres

    Source: https://twitter.com/DiamonDie
     
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  2. Sidereal

    Sidereal Senior Member

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    Sounds pretty hit and miss.
     
  3. Effi

    Effi Senior Member

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    Europe
    I found a report of the congress on the website of the organising me/cfs association, courtesy of their chairman Rob Wijbenga (Dutch original here: http://www.me-cvsvereniging.nl/verslag-me-congres) I made a passable translation, together with my faithful helper 'Google Translate'. ;)

    There might not be that much new information for us, well-informed patients. But it seems that there were a lot of medical professionals present (about 80!), and most importantly GP's too. They are traditionally the first doctor new patients go to see, so it is of the utmost importance that they are well informed about the biomedical nature of me/cfs. Apparently the organizers (mostly patients themselves!) had to put in a lot of work to get the conference accredited specifically for GP's (something about credit points for compulsory training), and they succeeded, so I think they did a great job in terms of getting their target audience to attend.

    (Btw/Fiy, the Belgian doctor Annemie Uyttersprot is an me/cfs patient herself.)

     
    Last edited: Oct 2, 2015
    helen1, Snookum96, soofke and 9 others like this.

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