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Anil van der Zee 🕺 Aug 9
"Cook Children's Infectious Disease Doctor Nicolas Rister did not treat Savannah but said experts wondered whether they'd see an increase in cases of chronic fatigue syndrome or post-viral fatigue."
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ME Association Aug 6
Severe ME Week 2020 - Untold Stories "Severe ME is like slowly being turned to stone" - Daniel
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Throckmortin 2h
I added captions to this video to make it accessible.
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Ade 14h
Yesterday I accidentally swallowed some food colouring. The doctor says I’m OK, but I feel like I’ve dyed a little inside.
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Norfolk & Suffolk ME Aug 10
Guardian podcast on long-haul Covid. Will resonate for , although no mention of Looking ok, sounding ok, feeling terrible. Worth a listen. 23 minutes long. (I use Podcast Republic as my podcatcher)
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DecodeME 22h
"It gives me so much hope when I hear about studies like DecodeME because this illness truly has ruined my life." Kennedy – ME patient. 🔵Sign up now at
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MortenGroupOxford Aug 10
, Great article by Jennifer Gerson discussing what it is like to experience . This looks too be very familiar for many , in the future research into long hauler covid could also greatly benefit
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Lisa_Cat 1h
tomorrow night at 8pm for and the growing cohort of sufferers. We can support each other - share the reality of serious post viral illness, learn and support the growing cohort of
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AnoirBen - انور بن 23h
Seriously, I double dare u. Stop this bs*.
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KarenG Aug 9
Caring for someone with is like tightrope walking without a safety net, where everything’s micromanaged to the nth degree to get through the day without stress or harm, where one ‘small’ change can cause huge distress.A reminder of how close to the edge & co live
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Amy Small 3h
Helpful advice for pacing for patients with and of course It might not be the same illness, it might become the same illness. Who knows. What I do know is that we can learn from eachother and mistakes made in the past.
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AnoirBen - انور بن 3h
Asked what would change his life, a 14-year-old boy with ME said that what would help most was “being believed”. Time and again in more than 4,000 written testimonies from a survey of ME sufferers, the desire to be believed is articulated...
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Vlad Vexler Aug 4
Ep. 67! I had severe ME for 2 years. It’s worse than you imagine. It takes you out of time. (*This video is recorded during a less good moment for a moderate patient.)
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Sarah Richardson Aug 9
Question for Do you ever have problems swallowing, almost as if you've forgotten how? Daughter with CFS/ME has been having trouble recently, she's not bed bound and fairly stable but feels like she's crashing a bit.
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Dr Ben Marsh Aug 7
So....exertion makes you so ill it can wipe you out for days, weeks, longer But is telling you to increase your exercise every day even if it makes you worse 🤔
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Craig Aug 9
Everything that causes fatigue due to the virus is down to changes in lifestyle after the virus according to them.
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A Journey Through the Fog Aug 8
Last year I was featured in an article about the neglect ME patients face, alongside these two beautiful souls: Jennifer Chittick & Merryn Crofts. Sadly, I am the only surviving member of this trio. At its most severe, ME kills.
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welleanor Aug 9
Heat’s unrelenting, yard out of control, patio unusable and me in a flare up. So thankful my husband has kept stuff alive and worked really hard this weekend so we can peacefully sit outside with loved ones.
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#MEAction Network Aug 8
is a day of remembrance when we think of those whom we have lost to myalgic encephalomyelitis & focus on those living with severe ME. For those of you in our community who have severe ME, we love you and we are fighting with you.
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lingerie daddy 🍒♿ Aug 4
One thing I've realised is that people don't get what mean by "rest" Rest according to my partner: mosey around the house in PJs, read a book, maybe bake cookies. Rest with ME: Lie in bed all day with ear plugs and an eye mask. No sleeping. Hope you don't need to piss.
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