£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...

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.

The only thing doctors are over-diagnosing is anxiety.

"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.

It's that time of the year again... Happy Easter, guys! 🐣🐇🍫

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.

PEM incoming!

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?

🪧 Bring Back Trains With Open Windows! ✊ 🚃

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...

Have the wingnuts started organising meningitis parties yet?

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.

I wonder what could have happened to the immune systems of young people since 2020 that would affect how quickly meningitis has spread? Hint: you won't find the answer on the BBC website.

Six years on from the start of the pandemic, the political will to help #LongCovid patients is still lacking and clinical support is still hampered by a dogmatic element among HCPs who refuse to acknowledge the research about infection-associated chronic conditions like #MECFS.

Despite it all, the world keeps on giving us mornings like this.

Today the world feels less safe than at any time since the Cold War. As global security structures weaken, we all feel the economic and existential shockwaves. For people with ME/CFS, whose lives are already afflicted by physical and financial insecurity, this can feel overwhelming.

Fasciculations in my arms and legs and, curiously, my left eye are an early warning system that PEM is imminent. I would make a terrible poker player.

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.