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28/9/2019 59 sec reality check from our Sept conference, we can only hope someone in authority will be equally moved enough to address the continuing deafening silence on

Did you know that the for —that advocates of CBT and graded exercise for often appeal to—has been rejected by more than 100 top scientists and clinicians? Although it is represented as an RCT, it didn’t compensate for systematic bias.

Gratitude to this whole community. When I first got ill 28 years ago, there was no social media and no sense of community, it was lonely and frightening. Thanks to patients, researchers, carers, Drs, families-everyone who cares about us.

PEM is NOT a normal reaction 2 exertion because of being deconditioned. It's BS Also my 1st signs of ME/POTS started a few weeks prior to my viral infection As a prof. ballet dancer I had ballet buns of steel. I was definitely not deconditioned Just sayin 🙄

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Having electric blanket switch to full heat on a Summer’s day like today & Hands & feet in bowl of iced water in Winter & Crashing from trying 2run a patient charity from yr bed Because There’s no other way 2get proper education out 2healthcare providers

"Supplying an outside source of kynurenine, as Dr. Bergquist proposes, could conceivably solve part of the problem by allowing those brain cells to make the neuroactive metabolites of kynurenine that they cannot make if the metabolic trap has been sprung..."

Really important for and to understand severe and very severe . This video is so sad. Please be aware that overexertion of people with and could push them into severe and very severe .

8 mins He describes but it’s not. It’s post-Covid ‘fatigue’ Recovering from COVID-19 / Can Coronavirus cause Post Viral Fatigue? via

ALL thks to -I got a mention from this post-Covid ‘fatigue’ patient fascinating video. Made contact so my link he couldn’t find is now included in refs on YouTube I pity them COVID-19 and Post Viral Fatigue: Growing Recognition via

Please join us tomorrow for - a weekly, online demonstration to raise awareness of , (M.E). For 1hr every week, patients and their loved ones, from all over the world, join forces to tweet about using the hashtag . ♥️

OMF is thrilled to announce the Kynurenine Trial for ME/CFS: Under supervision of Dr. Jonas Bergquist, the study aims to understand potential disturbances in the tryptophan metabolism & to test the benefits of treating people with ME/CFS with Kynurenine:

My postdoc Arnaud Germain and I have published a letter to the editor to explain our statement about 65 million ME patients worldwide in . The # was not based solely on the US Valdez et al 2019 study.

The trauma of sudden-onset “Like being in a major car accident/explosion...” “Over weeks/months you lose everything” covers the unspeakable again &this trauma never leaves with a fuzzy memory & flashbacks of those years/decades

Learning new IT skills is so hard when brain fries fast but like everything else in our struggle-we’ll get there eventually & continue supporting other patients Contemplating an odd special Zoom meet 4health professionals but will take much more time

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If every infected family in the UK travelled 260 miles to lockdown, imagine what the R number would be now? Social distancing is not just about a 2 m gap, it’s about not travelling long distances while infected. It puts many others at risk. A lot of shedding occurs pre-symptoms.

If anyone can think of any secondary gains of , like losing a MUCH loved career just surviving on sickness benefits & constant risk they’ll be removed being a burden to your family &those you LOVED caring for no social life missing family weddings, funerals etc Let me know

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