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Reb Shloima Jul 15
Replying to @LBatemanMD @Medscape
CDC still recommends GET for ! In treatment section: “ Patients who are tolerating their current level of activity and have learned to “listen to their bodies” might benefit from carefully increasing exercise to improve their physical fitness and avoid deconditioning. “
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Caroline Wright Jul 9
sometimes i need to check out what other are saying just to remind myself that no matter how lonely this can feel, i am not alone. thank you all for reaching out.
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Joan McParland 15h
Excellent observation for autistic patients but v few realise ME patients deteriorate fast from same ‘sensory overload’ with sound & noise & bright light intolerance. avoid A&E & hospital wards unless absolutely necessary. Many remain in dark rooms for decades
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Becky Hatfield Jul 12
My daughter’s school has just released its year 11 Leaver’s Song - daughter’s illness has robbed her of this final enjoyment. I hate
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Gabby Klein 9h
Replying to @GabbyKlein1
3- CDC has refused to adopt our international experts' Consensus Criteria - the clinical & research criteria ICC. Instead, they created another vague fatigue definition - IOM/SEID. They are not the same and the purposeful co-mingling by CDC is causing great harm to .
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Jacquie Wilson 🦋 Jul 11
Replying to @Kdcfsme @davidtuller1
You obviously haven’t a clue about how many have been harmed by therapies! I’d much prefer to listen to what all those eminent signatories think, than a handful of psychobabblers who think this serious disease is due to false illness beliefs! Just 1 example:
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Not Just Tired Jul 9
Surrounded by boxes but made it through the moving part and now in our new home! 🏡 📦 📦
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ME Life In a Tweet 13h
I used to really pride myself on my muscular strength, challenging boys to arm wrestles and never letting anyone carry anything for me no matter how I struggled. Now I can hardly lift the kettle and it feels, well, just totally shitty. Just saying.
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Gabby Klein 9h
Replying to @GabbyKlein1
There is more scientific evidence that die from than they fully recover.
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Something delicately vicious, no doubt. Jul 9
I want people to be angry for me, to be raging on my behalf about how little gets done to for people with . I want other people to be indignant, grief-stricken at my loss, at all our losses. Why is it mostly just us, the , who have to shout, when we can't?
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Jess Sylvie Jul 13
Gut wrenching disappointment of a crash after a bit better. I feel like my legs are being damaged. The rest of me is fighting gravity. And much more crap... I've heard swearing was good for pain so... Fuck this shit!
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Emerge Australia 23h
Emerge Australia welcomes $370,000 in Federal funding! Thanks to we will be better able to effect positive change for people living with ME/CFS
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Alice Lewis Jul 13
Darn thing is in fighting against ovr the pond, which is a 'must'... The situation in the USA re GET + CBT where crux of the matter is needs 2B dealt with❗️ +Remember IOM--SEID recommends 'exercise' +counselling. This is NOT
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A Journey Through the Fog Jul 16
I'm a severe ME patient living in Norwich. I'm bed bound and suffer daily with debilitating pain and exhaustion. Can you please tell me why you declined the opportunity to commission care from Dr Luis Nacul that could have greatly improved my standard of living?
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Dress for ME ⚽️➡️🏠😍🏴󠁧󠁢󠁥󠁮󠁧󠁿 Jul 11
After years of severe ME I’m v lucky to be back in moderate, but I realised today I don’t really have any local friends because of years of isolation so I went out for tea on my own. I raise money for so we can all have a chance to reclaim our lost lives!
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Gabby Klein 6h
Replying to @Derya_
The CDC is recommending graded exercise therapy (GET) which worldwide have been fighting against for more than a decade bc of how harmful it is for us!
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wigglethemouse Jul 12
Was able to stop off at the park to feel the wind blow on my face after blood test. So magically wonderful.
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Hope 4 ME & Fibro NI Jul 16
Sincere thanks to we can confirm Dr.Michael McBride CMO for NI will be opening our Sept conference A time of great hope&recognition for7000 in NI by working 2wards specialistME services
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🌼Hayley Date🌼 9h
I've only had my new smart watch for a few days but it seems that unless I am sat down or have my legs up/lying down my heart beat goes anywhere from 125-148bpm. Not really sure what to do with these readings?
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Claire C Jul 11
How many others have crashed or are crashing because of the ? ☀️☀️☀️ Or is this a stupid question? Because you won't be able to answer, because you are in bed feeling dreadful... (like my daughter) 😥😥😥💙💙💙
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