Dan Wyke
@danwyke.bsky.social
Severe M.E. patient, person-centred counsellor (currently not practicing), recovering poet (Rack & Waterloo Press)
Apologies if this has already been pointed out but, last year, as predicted by patients, all three of the NIH RECOVER Initiative's large-scale brain retraining trials failed to improve cognition in #LongCovid patients. #MECFS www.healthrising.org/blog/2025/12...
RECOVER's Neuro Long COVID Clinical Trial to Improve Cognition Flops... (As Expected) - Health Rising
The RECOVER Initiative's big Long COVID Neuro trial failed. Find out how and why and what should come next.
healthrising.org
"The primary objective of this case study is to emphasize the severity of progressively worsening symptoms associated with ME/CFS." www.cureus.com/articles/487...
Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Leading to Assisted Suicide in a Patient in Her Late 30s: A Case Report
A patient in her late 30s developed severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) following an Epstein-Barr virus infection. No distinct autoimmune or autoinflammatory disorder co...
cureus.com
"This review charts the shift from early post-infectious observations through psychosocial dominance to contemporary biological frameworks, emphasising that pathology is state-dependent and revealed under physiological stress." (Download PDF for full text.) link.springer.com/article/10.1...
Reframing ME/CFS: toward a unified mechanistic model of chronic post-infectious diseases - Journal of Translational Medicine
Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe multisystem illness marked by post-exertional malaise (PEM), cognitive dysfunction, autonomic disturbance, and impair...
link.springer.com
Good news on #MEAwarenessDay. 🥳 Building on the success of 'Decode ME', which found evidence of genetic predisposition, the govt is providing £4.75m to delve deeper. 'Sequence ME' will aim to identify which specific genes are involved in #MyalgicEncephalomyelitis. archive.ph/2026.05.11-2...
archive.ph
Today marks the start of #MEAwarenessWeek (11-17 May). More people are aware of #MECFS but work is still needed to counter misinformation and share medical information. Here are 6 myths and facts everyone should know about #MyalgicEncephalomyelitis. worldmealliance.org/2025/04/worl...
World ME Day 2025: Six Myths and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME) - World ME Alliance
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating illness that affects millions of people worldwide. However, persistent myths and misunderstandings hinde...
worldmealliance.org
My dad has end-stage cancer but he still takes the time to send me pictures of his garden. 🥰
£200 for a 30 minute appointment with an ME-aware doctor (not naming names). The disability/chronic illness tax strikes again! #MyalgicEncephalomyelitis #MECFS
ME Awareness Week is approaching. I don't know that there's anything I can say that I haven't said before. A lot of progress *has* been made but acceptance and understanding by the whole medical profession and effective treatments for all patients are still a long way off. #MECFS
Bank Hols with ME are usually a downer but I've had a good afternoon. I listened to a podcast about Peter the Great, watched some snooker, read a few pages of Henry IV pt2 and listened to a talk about compassion by Rob Burbea. Fingers crossed I end today under my PEM threshold.
It was always a mistake for Integrated Care Boards to cut the number of district nurses. An increase in the number of people suffering from chronic conditions, like #MECFS and #LongCovid, means patients need home-visits more than ever.
"Simply put, the bodies of people with ME/CFS can not efficiently do the work of recovery. And because these abnormalities are found in pwME but not matched deconditioned controls, we can confidently say that PEM is not deconditioning." likeannopeningbandforthesun.substack.com/p/in-pursuit...
In Pursuit of Understanding the Crash
What Post-Exertional Physiology Tells Us About ME/CFS
likeannopeningbandforthesun.substack.com
My two key takeaways from this week on Twitter are: 1/ A lot of patients - especially women - have been gaslighted by doctors. 2/ A lot of doctors shouldn't be practicing medicine.
"Over-diagnosis" is a fiction designed to cast doubt on historically under-researched diseases which disproportionately affect women. Patients either meet diagnostic criteria or they don't.
The medical profession needs a radical overhaul. Since the pandemic started, there has been a sharp increase in chronic diseases which traditionally doctors have been taught to ignore/disbelieve. If drs cannot up their game, they should be stripped of their licence to practice.
The idea that ME/CFS is "over-diagnosed" is cooked up by biopsychosocial extremists to deny patients medical attention.
Saw my in-laws for two hours this week for the first time in 10 years. They are elderly and realistically this might be the last time I see them. There are people in this country who are responsible for preventing the development of treatments for ME, and breaking families apart.
I've recently discovered that an effective way to increase the inhibitory neurotransmitter GABA without resorting to Diazepam is to take, well, GABA. This stops my PEM in its tracks every time. Inexpensive and safer than benzos. Intending to experiment with a maintenance dose.
Another problem pwME face as a result of the difficulty their bodies have metabolising fat for energy is the accumulation of cholesterol. To make matters worse, pwME often can't tolerate statins because they can directly impair mitochondrial performance + cause neuralgia/myalgia.
One thing I hate about ME, that catches me out every time, is how long it takes for my body and mind to let go of even minor stressors. My fight-flight response gets activated at the drop of a hat and the associated thoughts rattle around my head for way longer than is helpful.
I sat in the garden for half an hour this morning and realised it was the first time I've been out of the house since a hospital appointment in October. People have no idea what life is like for us. #pwME #MECFS #LongCovid
I've been registered with the same surgery for 16 years and in all that time not a single dr there has indicated that they recognise me. Aside from being an inefficient way to practice medicine, I find it really rude! Is this a strategy GPs use elsewhere or unique to my surgery?
Timms Review of Personal Independence Payment: Call for Evidence Published: 19 March Closes: 28 May If you claim PIP, and can manage it, please provide details of your experience by completing this online form. #MECFS #pwME #LongCovid #Disability www.gov.uk/government/c...
Timms Review of Personal Independence Payment: Call for Evidence
This Call for Evidence is being administered by DWP on behalf of the Timms Review steering group and seeks to gather feedback and insight relating to the areas outlined in the Terms of Reference of th...
gov.uk
It would have been a whole lot easier - and ultimately cheaper for the government - if they had installed air purifiers in schools and hospitals and other public buildings.