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"Misuse of influence" Peter Scott Gordon on NICE guidelines process for ME #MEcfs "I am hugely disappointed by the apparent use of personal communications rather than the formal consultation pathways in place for NICE stakeholders. 1/2 holeousia.com/2023/07/25/mis…

I had my graduation at the beginning of this month for my diploma and wanted to say a big thank you to all #pwME who helped me through with words of support and encouragement. Relapsed since. As much as I appreciate what I've done, it's definitely taken its toll. #ME #MECFS

In THREE WEEKS our book “A Physiotherapist’s Guide to Understanding and Managing ME/CFS” will be released!! 🥳 Publication date is Monday 21 August, but you can pre-order a copy on the link below uk.jkp.com/products/a-phy…

. @DecodeMEStudy needs more participants - Please RT Are you aged 16 or over, live in the UK and have had an ME/CFS diagnosis from a healthcare professional? If so, please take part here: decodeme.org.uk/portal/ #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #DecodeME

Devastated to pass on the news that Lucy (Lu) Lu recently passed away due to LMS/Leiomyosarcoma. Lu was an incredible patient advocate for the ME community and truly one of the kindest, most thoughtful people anyone could have ever hoped to know. #MECFS

Highlighting very #severeME #mecfs #seid for #severeMEawareness Lois Owen struggled to speak & eat & seemingly it had been felt she was too weak to cope with going in hospital. She succumbed to infection caused by malnourishment & died in 2007 meassociation.org.uk/2012/02/tragic…

On Severe ME Understanding and Remembrance Day my thoughts are with all those suffering silently, chained to their beds, hiding in the shadows, waiting in vain for a better day that never arrives. #SevereMEDay #EndMEMalnutrition #MyalgicEncephalomyelitis

#SevereMEAwarenessDay In this poem, I pay tribute to Alem Matthees, a brave Australian spirit who fought for truth and justice, even as his health deteriorated. His efforts to expose the flaws in the UK PACE Trial data led to improved health guidelines for ME/CFS in the UK,

#SevereMEDay August 8th. How fitting that today the doctor from the assisted suicide association called to make an appointment with me for an assessment. #IWantToLiveButNoTreatmentAvailaible #ME #MEcfs #MCAS #Lyme #CCI #POTS #SmallFiber #FluoroquinoloneToxicity #BuriedAlive

#SevereMEDay It can be life threatening for severe ME patients to be exposed to uneducated and ignorant medical professionals in U.K. hospitals Some have died, others have come close to starving to death. ME can happen to anyone. It’s a tragedy and nothing is changing.

Wouldn’t it be wonderful if people outside of the ME bubble posted or reposted our efforts to raise awareness of this illness? ME can happen to anyone. Your children, your family, your friends. No one is exempt and then life as you know it is virtually over. #SevereMEDay

#SevereMEDay Before & after. And there are so many who are more severe than me, who can’t speak, can’t move at all. In the last 1.5 years being bedbound, I learned how much you can suffer and not die. I also learned that the sicker you are, the less people will believe you.

#SevereMEDay #MECFS #ME

Many times I get down living with #ME and it frustrates me being unable to work more hours in order to help more people. Then I remember that I don't have #severeME and I'm grateful being able to do a little bit rather than nothing at all. My heart goes out to you 💙 #SevereMEDay

On #severeMEDay I’m sharing a new blogpost looking at how UK social policy on #MECFS changed (for the worse) after academic intervention from some of the usual suspects. I believe this is a contributing factor to the current neglect and misinformation. healthcarehubris.com/post/who-is-lo…

For #SevereMEDay New free short module on severe #ME /CFS – ME/CFS Medical Education Campaign from Dr Nina Muirhead #MedTwitter #LongCovid mecfs-med-ed.org/2023/08/09/new…

#MedTwitter Educate yourselves about #MEcfs Patients in the🇬🇧with ME are dying due to medical ignorance & stigma Watch these films on ME dialogues-mecfs.co.uk/videos/ Take this free 1 hour CPD course on ME studyprn.com/p/chronic-fati… Follow the '21 NICE guidelines for ME

"NIH Researchers Find New Mitochondrial Abnormality in ME/CFS" 'There was no holding back on this study. It was a full-court press by some NHLBI researchers who have apparently become very interested in ME/CFS.' healthrising.org/blog/2023/08/1…

"Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" 5,264 Signatures so far, next goal 7,500 Please sign & share ✍️🔄✍️ #MEcfs #pwME #LongCovid change.org/p/cochrane-wit…

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review - Sign the Petition! chng.it/tJBVCzLn via Change.org UK