Being immunocompromised is exhausting. Everything I do requires at least five hand-washes! 😮‍💨

Whenever I see old photos of myself I fancy that I see signs of sickness. I seem malnourished and have dark rings around my eyes. I wonder how many embryonic health issues I downplayed or ignored, how many times I left my GP's without any answers. 1/2

I spend my life trying to avoid PEM or recovering from PEM.

College has wrecked my daughter's health. The train she takes has sealed windows and no-one wears a mask. At college there aren't any air purifiers and no-one masks. She's missed about 30-35% of her course through sickness and is understandably worried she won't pass her A-levels.

So waking up with PEM (from yesterday's haircut) is fun. 😩

Dreamt of my former best friend who visited me once eleven years ago then disappeared.

It is generally illegal for NHS hospitals in the UK to refuse admission if it is clinically necessary and urgent, but of course there are get-outs and they can refuse admission under specific, reasonable, and lawful grounds - that is, by saying pretty much whatever they want. 1/2

A lot of doctors should not be practicing medicine and a lot of so-called mental health professionals should not be allowed anywhere near a vulnerable patient population.

I suspect it wasn't a coincidence that the Guardian published another misleading article about "chronic fatigue syndrome" [sic] on the same day an informative and accurate discussion about ME/CFS was aired on BBC Radio 4 (Inside Health).

Eugh, after a whole week almost entirely free from PEM and pain, I've picked up another "cold" which has set off myalgia, brain fog and the malaise associated with sickness behaviour. With luck it will pass in a few days but there's always the fear it'll lead to a permanent deterioration.

Today (23 Feb) reps from Forward ME are meeting with the DHSC and NHS England to discuss progress on the development of a clinical care pathway for people with mild-moderate ME/CFS. However, crucially, the pathway fails to include people with severe ME. 1/3

When my ME became more severe, my sensitivity to supplements/meds increased. What I hadn't anticipated was that this could be a good thing. For example, when I was moderate, PQQ felt like it had no effect at all. However, now, I can clearly feel it increasing my energy. 1/2

Some suggestions for self-care while living with #chronicillness. #mecfs #longcovid chroniclivingtherapy.com/wyke-hope-al...

Yesterday's discussion about FND highlighted two things: BPS fanatics have convinced neurologists that FND is a legitimate neurological condition; and in turn neurologists have duped many ME/CFS patients into accepting FND as a bona fide neurological diagnosis (see responses).

That this is by far my most used meme says a lot about the state of medicine rn. #MECFS #MyalgicEncephalomyelitis #LongCovid #Neurology #FND

I’m Niko Suvisto, a Finnish photographer, and I’m 99% bedbound due to severe myalgic encephalomyelitis (ME/CFS). I’ve had ME for over a decade, and since 2022 I’ve spent my days confined to my bed 24/7. 1/4 #Photography #MECFS #pwME #SelfDocumentary

Disappointing that clinicians are still confusing chronic fatigue with ME/CFS. Is it deliberate or a sign that many health professionals just don't keep up with the research literature?

Seeing more and more people with ME being discharged from hospital - or just leaving appointments with consultants - with a diagnosis of FND on their records. Why is this happening? Is there a concerted effort by neurologists etc. to replace ME with FND? If so, who instigated it?

Statin update: I've been almost entirely free from nerve pain since stopping statins a week ago. Unexpectedly my Visible HRV reading has also improved - climbing into the 60s for the first time ever. #MyalgicEncephalomyelitis #MECFS

Another young woman is at risk of being starved to death in an NHS hospital, but thank god none of her (usually male) consultants have to learn something new, or heaven forbid, rethink their prejudices about #MyalgicEncephalomyelitis. #MECFS

I despair of the dogmatism of the medical profession and the cruelty shown by so many members of the public. It's a terrible burden for patients whose bodies are already broken. 1/4

This is all starting to sound ominously familiar. Is there going to be another preventable death because the government refuses to establish a national specialist service for very severe ME? The failings here are criminal. #MyalgicEncephalomyelitis #MECFS archive.ph/2026.02.15-2...

A day blessedly free from PEM and pain.

I'm wondering if statins could be responsible for my recent deterioration which has left me with less energy and more myalgia/neuralgia. I don't know why it didn't occur to me sooner. I'm going to stop taking them and boost my CoQ10 intake for 2-3 weeks...🤞 www.mdpi.com/1422-0067/22...

Tried to take a shower yesterday so of course I'm wiped out, in pain and feeling wretched today. Post-exertional malaise (PEM) is such an inadequate term for the immune, metabolic, and neuromuscular dysregulation people with ME/CFS suffer long after they've completed an activity.

Go for it. I don't even care any more.

It's interesting that the GMC is reportedly concerned about doctors recommending off-label treatments for #MECFS but it gives them a free pass for failing to implement NICE guidelines. 🤨 #MyalgicEncephalomyelitis

Urgent Mutual Aid Request PM is an immunocompromised trans person w severe ME in immediate need of longterm (2+ yrs) housing in Chicago, which must be: - power wheelchair accessible - quiet, mold free, extremely covid cautious Please share & DM if you can help. #HelpSky #MutualAid #HelpFolksLive

Nerve pain in my arms has returned since my last creatine-related post so I don't think I got away with it after all. It's also caused some sleep disruption and gastrointestinal discomfort so I'm probably not going to persevere with it for now. Not enough upside.

Not feeling great today. I guess it's only to be expected when you've had a neuro-immune disease for 16 years which has been completely ignored by the medical profession. 😞 #MyalgicEncephalomyelitis #MECFS

Creatine update: 100mg was low enough to avoid aggravating nerve pain but not enough to alleviate brain fog. Back to the drawing board.

Trying Creatine again. Microdosing. 100mg instead of 1g. 🤞

'A Duty Forsaken: The Legal and Ethical Abandonment of ME/CFS Patients' Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS

With a heavy heart I've decided not to renew my annual payment to the Counselling Directory (where I advertise). I've not been able to work at all since March '25 and my cognitive energy in particular has declined so much that I can't imagine being able to offer consistent support any time soon. 😞

Brain fog has returned but the pain has subsided. Oh, well... 🙄

Creatine update: 1g: definite improvement in cognitive energy and clarity HOWEVER it also aggravated nerve pain in my limbs - which is a thing that can happen, according to AI, as water is drawn into muscle cells and presses against the nerves. Not sure whether to continue or keep for emergencies.

I've never liked the sensation of water entering my muscles that I get when taking Creatine, but it shows up so many times in people's stacks that I'm going to give it another go. Mainly hoping it gives my brain some energy. #MyalgicEncephalomyelitis #MECFS

Uh-oh, I suddenly feel OK. That's not a good sign. 😬

Best supps and/or meds for "brain fog"? What works best for you right now? #MyalgicEncephalomyelitis #MECFS #LongCovid

I made a few phone calls yesterday so of course I've got PEM again today. 😩 #MyalgicEncephalomyelitis #MECFS

Another member of our community has passed away. By my count that's four people in as many days. Won't someone have mercy on us? Condolences to family and friends.🕯️ #MyalgicEncephalomyelitis #MECFS

Three deaths in three days. How many more #MyalgicEncephalomyelitis patients must die before governments, health agencies and medical professionals do something? #MECFS

My PEM has become more distinct and predictable (and worse) as my #MyalgicEncephalomyelitis has become more severe. Physical exertion manifests as bodywide pain and cognitive exertion results in cognitive exhaustion - an almost complete shut down of mental function. #MECFS

A well written piece on living with severe #MyalgicEncephalomyelitis. Really ought to be read by health professionals, particularly those amateur psychologists who work in the counselling profession. #MECFS virology.ws/2026/01/27/t...

"This paper reviews current knowledge on neurotransmitter systems implicated in ME/CFS and Long COVID, focusing on potential mechanisms of dysregulation and their roles in disease pathology and symptom generation, as well as implications for treatment." www.preprints.org/manuscript/2...

Dentist appointment scheduled for next month. Already worrying about pausing LDN ahead of the appointment. Last time I skipped a morning dose, I was crashing badly by mid-afternoon. 😩 #MyalgicEncephalomyelitis #MECFS

Many of you will have already done this, but if you haven't, I recommend asking the AI of your choice about each of your supplements and medications in relation to #MECFS and/or #LongCOVID, then asking it to produce a report by analysing the information together. 1/2

Can't decide whether to keep on taking PEA (Palmitoylethanolamide). How do other #pwME find it? Is it one of those supplements that have a noticeable impact or is it one that quietly works in the background? #MECFS #LongCovid

Thanks for the birthday messages guys. I was well looked after by my wife and daughter and I managed to watch a whole football match *and* The Night Manager. 🥳

Images from Daryna’s GoFundMe. She is 99% bedbound with severe ME/CFS and Myasthenia Gravis. The photos show damage to her apartment building and neighbouring buildings following shelling in November. www.gofundme.com/f/help-daryn...