We've got a piece out today from Jenny Wilson sharing experiences from decades living with and supporting people with ME. This struck me - as true today as in the 80s 👇 "Naively, I thought that with the diagnosis would come treatment. I was wrong." thereforme.uk/p/a-personal-h…

What plan does Mr Streeting have to prevent #LongCovid and #MECFS? #r4today

For years I've taken many of the steps we associate with pacing and maintaining a steady baseline. Even so, over the course of 14 years my ME has gotten worse. It's the same for lots of long-haulers. At least for a subgroup of people, ME appears to be a progressive disease.

Please keep ordering and distributing these leaflets if you or someone else are able to. #LongCovid #MECFS #MyalgicEncephalomyelitis

I’m looking for accounts who talk about medical gaslighting and other types of clinician-inflicted trauma to follow. If you’re one of these, comment below so I can find you 😊 #patientadvocacy #pwME #eds #neisvoid #medicalgaslighting

This is great. Can’t help wondering where I/we’d be today if just one doctor had been able to identify & explain #PEM-as in 25 years ago crawling to the bathroom on all fours but couldn’t make it back to bed. When nothing made sense, my understanding then, I was just “sick&tired”

How does the Institute of Policy Research propose preventing #LongCovid and #MECFS? #r4today

Predictably healthy eating and exercise are recommended by the Institute of Policy Research to improve the nation's health but disappointingly no mention of air filtration systems or healthy indoor air. 😞 #r4today #LongCovid #MECFS

Does the Institute of Policy Research realise that exercise is contraindicated for #MECFS because it is potentially harmful? #r4today

On #WorldPatientSafetyDay, supported by 200 healthcare professionals, I have written to Wes Streeting MP in collaboration with #There4ME calling for urgent action to improve care for people with severe #ME and #LongCovid. Our piece in the Times here ⬇️ 🧵 archive.is/XVxOt

My daughter Isla died in May, she had Severe ME. She was left to rot and die at home with no support from the NHS. She only received one home visit from her GP in her years of illness. Things have to change. #ThereForME #pwME #wesstreeting #severeME

One year ago today. Still no improvement in the situation for #ME patients and more deaths since then. Remembering Celine on this anniversary day and thinking especially of her family and friends💙 Lou Corsius

I had to give up family time due to chronic illness. I had to give up going to celebrations due to chronic illness I had to give up hobbies due to chronic illness I had to say no to vacations due to chronic illness and yet people still think I’m making it all up.

UK health professionals issue urgent appeal to address huge gaps in NHS care for ME patients, especially severe cases. Binita Kane Karen Hargrave virology.ws/2024/09/19/tri…

Good morning Dr Beccy Cooper MP, please can you sign this letter to Wes Streeting MP, highlighting serious concerns about the safety of #MyalgicEncephalomyelitis patients within the NHS and calling for urgent action to address these issues. Thank you.

We've added another 60+ signatures to our World Patient Safety Day letter. 🙌 Past or present HCPs, there's still time to sign – the deadline is today! Thank you all for your incredible support and for sharing. Link below. #ThereForME

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review - Sign the Petition! chng.it/YG6gbFdtFV via Change.org UK

The coroner's office has confirmed that it's the same link as before for anyone who attended online last month. Please be in the waiting area before 10am on Friday (27 Sept) and you'll be admitted. Link locked thereafter. #MaeveInquest #MyalgicEncephalomyelitis

#MaeveInquest 10:00 Friday 27 September 2024 [email protected] for the live link. This is the 13th hearing. 1 witness who has submitted 3 separate statements. Why was he not called BEFORE HMAC concluded? Why has she not published half the facts heard? Whose court is it?

One issue with the NHS is that it isn't equipped to treat complex chronic illness like #MyalgicEncephalomyelitis. Patients are regularly dismissed and gaslighted or offered inappropriate and potentially harmful treatments like CBT and graded exercise therapy. #r4today