EXCL: Families of children with long Covid have been accused of fabricating the illness, reported to social services & in some cases taken to court with the threat of removal to foster care.

My investigation shares three stories - there are many more.

inews.co.uk/news/parents-c…

1) Heartbreaking presentation on patients with very severe ME by Sabine Hermisson at #UniteToFight2024

These patients are often too weak to hold a cup, lift their arm, brush their teeth or roll over in bed. Patients feel trapped, crushed, chained and helpless.

A friend asked the Department for Work and Pensions why they part funded the #pacetrial and if they had funded any other trials for any other diseases and if they had an agenda
#MEAwarenessWeek

Here's a video from Anil van der Zee © on living with severe ME, plus an interview about why he made the film and how being unable to move--he is a former dancer--makes him feel like a part of himself has been amputated: virology.ws/2024/05/14/tri…

Powerful animation of the reality of #MyalgicEncephalomyelitis .

And fantastic work to make Continuing Professional Development credits available through this work. Do check out the #DiscoverME film and what you can learn from it this #WorldMEDay .

Today is #WorldMEDay . My partner Soph continues to get worse and I have written a small piece to try to describe - in a tiny way - what it is like a the moment. She has also allowed me to share one of the most recent photos of her. #pwme #MECFS #severeME #MEAwarenessDay

Severe #MECFS is extremely isolating. Having visitors can make people with ME more ill for days, weeks and sometimes even longer.

For #MEAwarenessDay watch this powerful film by Anil who only sees one or two people a year.

“Since the NHS was founded 76 years ago, huge advances have been made in combating disease and illness. But those living with ME have been left behind.” thetimes.co.uk/article/people… by Sajid Javid

I highly recommend this video to anyone interested in the PACE trial controversy. It provides an excellent summary of the issues and clarifies why PACE is so problematic.

Thank you, Peter Judodihardjo and davidtuller
#MECFS (BTW, I like the thumbnail 😏)

Remarkable researchers hunting for ‘something in the blood’ of people with ME. How Audrey and Charlie aim to replicate one of ME research's s most promising findings to help them home in on the causes. (Blog)
mecfsresearchreview.me/2024/05/08/res…

So you may want to sit down for this one. An excellent article in the Telegraph. (Just don’t read the comments which all go to prove the toxic attitudes towards the illness).
archive.ph/JtPVu

My Severe and Very Severe #MECFS video has just gone over 100,000 views.

Thanks to everyone who continues to share, and to the YouTube algorithm which has started pushing it a lot more over the last month 🙏📈

youtu.be/CTxwlf7LSrA?si…

The first part of our #MEAwarenessDay #WorldMEDay direct action has arrived. Thanks so much to Billboards for LC/MECFS for sponsoring our banners. Making sure #pwME who cannot physically protest are visibly there has always been a priority. There will also be a #LongCovid patient banner.

Full article:
Sajid Javid: patients with ME are being ‘dismissed’ by doctors

The former health secretary said care was being held back for sufferers of the neurological disorder because of a lack of specialist NHS services

archive.ph/2024.05.02-150…