explore | Grilled Cheese

@tomkindlon.bsky.social Sep 6, 2026, 1:48 PM

ME Research UK:

ME Research UK's August e-newsletter was sent to inboxes throughout the world earlier today.

Not on our list?
Sign up - tinyurl.com/5n94u488 or read online - tinyurl.com/4n4rnpmu

#mecfs #cfs #pwme #MyalgicEncephalomyelitis

@tomkindlon.bsky.social Sep 6, 2026, 12:13 PM

5/
“And this leads to the third harm: the physical damage caused by the system’s response to the illness.”

#PwME #MyalgicEncephalomyelitis #MEcfs

And this leads to the third harm: the physical damage caused by the system’s response to the illness.

When ME is not recognised as a serious biological disease, patients are often forced to exceed their limits. We have to spend our very limited energy proving our condition, attending procedures that are not adapted to our disability, fulfilling administrative and legal requirements, defending our access to social support, or repeatedly explaining our limitations.

For a person with ME, this effort is not harmless. It can worsen the disease itself.

This is the crucial point: patients with ME cannot wait for a cure before the harm stops.

@tomkindlon.bsky.social Sep 5, 2026, 10:54 PM

2/
“The first harm is the disease itself: the biological damage caused by a serious, disabling illness. This is the harm that research is trying to address. We urgently need better diagnosis, effective treatments and, ultimately, a cure.”

#MyalgicEncephalomyelitis #PwME

@tomkindlon.bsky.social Sep 5, 2026, 2:29 PM

‪2/‬
‪Description from an ME caregiver:‬

‪“Amy Mooney (parent, caregiver, occupational therapist) has excellent advice for healthcare providers regarding people with severe/very severe ME”‬

‪#PwME #MyalgicEncephalomyelitis‬ #PwME

@meactionuk.bsky.social Sep 4, 2026, 2:20 PM

The video of the entire session is available here www.scottishparliament.tv/meeting/heal... Contributions from the Third Sector organisations begin around 11:11:29
#MyalgicEncephalomyelitis #MyalgicE #ScottishParliament

@meactionscotland.bsky.social Sep 4, 2026, 2:20 PM

The video of the entire session is available here www.scottishparliament.tv/meeting/heal... Contributions from the Third Sector organisations begin around 11:11:29
#MyalgicEncephalomyelitis #MyalgicE #ScottishParliament

@tomkindlon.bsky.social Sep 3, 2026, 3:04 PM

2/
Official description of the book, "Ascent of Crime", and Dr Bansal

Link:
www.amazon.co.uk/Ascent-Crime...

#MECFS #PwME #MyalgicEncephalomyelitis #MyalgicE

Official description:
"While in the final year of his veterinary course, Ben becomes profoundly ill. After a slow and difficult improvement, impeded by the disbelief of his medical carers, he becomes disabled by a continual exhaustion. He is ultimately diagnosed with Myalgic Encephalomyelitis (ME) but to his further dismay he then develops a marked hypersensitivity of his hearing and sense of smell. A chance meeting with an open-minded surgeon leads him to a job in cybersecurity with the police and then on a journey in which his disability becomes a much valued asset in the fight against crime."
Dr Bansal sent me this which he told me is on the back:
"Amolak Bansal is a retired clinical immunologist and allergist who has worked in several countries around the world and in his last position in south London also ran one of the UK's national centres for ME/CFS. In addition to his work on immune deficiency and allergy, he has written numerous research papers on the underlying immune issues in ME/CFS and also how the condition may be diagnosed and managed. Despite long Covid now being recognised as a genuine and disabling condition caused by a virus, he is keen to rectify the common misunderstanding that ME/CFS is a psychological illness. This novel is based on his investigation and management of several thousand patients with this condition and their fight to be properly understood and cared for."

@tomkindlon.bsky.social Sep 3, 2026, 2:59 PM

🧵
The new novel by retired ME/CFS expert physician, Dr Amolak Bansal, is now available on Kindle.

The main character has ME!

I haven’t seen any reviews

#MECFS #PwME #MyalgicEncephalomyelitis #MyalgicE

1/

@colleensteckel.bsky.social Sep 3, 2026, 12:41 PM

Interesting studies discussed in the article.

We need Doctors to know about the overlap between diseases like #Multiplesclerosis and #MyalgicEncephalomyelitis as well as the useful biomarker for Myalgic Encephalomyelitis.

Patients need support for dysfunctional immune system!

#Medsky

@itsmegandamnit.bsky.social Sep 3, 2026, 4:59 AM

Found out I have Myalgic Encephalomyelitis about a month ago. It's the dumbest thing ever.
A "chose your own adventure" syndrome for my nervous system. So dumb.
#MECFS #Disability #MyalgicEncephalomyelitis