I have devoted my entire life and career to advocating on behalf of Alzheimer's patients, their families, and their caregivers. I've managed treatment plans for thousands of patients and conducted hundreds of social initiatives. Now I am the mother of a 14-year-old with

She is 16 now. Still no cure. #LongCovidKids #LongCovid

ME/CFS News It’s not black and white. Misogyny is a definitely a big factor in the way ME/CFS patients are treated but so are other factors like those you described. It’s a big mess of prejudice and ignorance. Someday the science will overcome the ignorance. I promise. ❤️ Ours is a

Simon Wessely has never centred the patient in his model of "care". His modus operandi has been maintaining power, & making himself rich by keeping costs down for insurance companies and medical systems. Sick people have been collateral damage in the making of "Sir" SW. #pwME

'Patients are alienated from the carers and support they should be having, it's very, very lonely...I am completely alone.' Caller John has had ME, more commonly known as chronic fatigue syndrome, since 1986 - he shares his story with Natasha Devon.

🧵 of clips from the LBC segment about #MECFS and Simon Wessely yesterday Natasha Devon reading out George Monbiot article about #MECFS and the #GreatestMedicalScandal mentiond Wessely, PACE, & the Science Media Centre that portrayed patients as abusive.

How many other conditions don't - ever see a consultant - have a care & treatment plan - have annual reviews - have interactions with HCP who say "what's that" or "I don't believe in that" & are allowed to ignore NICE guidelines #GreatestMEdicalScandal #MECFS #LongCovid

Long segment about #MECFS and #LongCovid on BBC Breakfast (15 mins) includes interviews with Binita Kane Dr William Weir Karen Hargrave Oonagh Cousins Mentions symptoms, severity, history, Ramsay, NICE guidelines, problems accessing care and more youtu.be/AuqthHADSWw?si…

Superb piece on ME and Long Covid on BBC Breakfast . This is exactly the sort of engagement we need with the media. Thanks as ever to Adam for his great work archiving this stuff. youtu.be/AuqthHADSWw?fe…

Is it now time for the likes of BBC Breakfast & UK Media to question who within the NHS & Dept of Health have promoted the psychologisation of M.E & for whose benefit, because it certainly hasn't helped sufferers? 70 years since M.E was first coined.

Heartfelt condolences to everyone who knew and loved Isla. Another young life lost to #ME. A broken heart emoji just feels totally inadequate.

14 years #stillnocure4ME

More from the letter Margaret Williams (pseudonym) wrote to Natasha Devon following the LBC programme on #ME #GreatestMEdicalScandal

📢#ME is clear to see in the blood of 1,455 #pwME <New Preprint, not peer reviewed> 116 blood molecules or cells are significantly different between #pwME and population controls & in both females & males & these differences are NOT due to inactivity medrxiv.org/content/10.110… 1/4

Margret Williams has written to Natasha Devon responding to Simon Wessely's claim that "he's never suggested that ME or Chronic Fatigue Syndrome are non diseases"

The most harm caused to ME patients has been by cognitive-behavioural treatments like CBT + graded exercise therapy (GET), recommended by GPs. Even now when GET is explicitly warned against by NICE guidelines, some GPs insist on prescribing it. Please let The Telegraph know.

#PEM explained in simple terms by ChatGPT: When patients engage in physical activity, they show a reduced ability to extract oxygen and produce energy in their cells. Growing evidence suggests this is due to problems with their mitochondria and blood flow, which are worsened by

Pacing is NOT rehabilitative for #PwME & pwLC that suffer from #PEM. It’s a necessary adaptation to a neuro-immuno-metabolic illness. It’s a palliative, a stop gap measure. When you have #MEcfs, you’re unable to produce ATP on demand which your body needs, even while resting.

Patients with severe ME at risk of starvation, doctors say #ME #MEcfs thetimes.com/article/1d897c…

HELP us to make NHS hospitals a safe place for #pwme 💙🦋 - I’ll continue in comments; Wes Streeting MP @dhscgovUK  @gwynneMP @laylamoran Patient Safety Commissioner Binita Kane Karen Hargrave Emma GL #ThereForMe and #WorldPatientSafetyDay #WorldPatientSafetyDay2024