Lactic acid hasn't fully cleared from muscles overnight so my arms are still burning this morning. Bad time to run out of magnesium spray. Improvising by dissolving mag bath flakes in a misting spray bottle. Seems to be helping. #MyalgicEncephalomyelitis

Rough day. CBD oil barely touching post-shower pain. 😣 #MyalgicEncephalomyelitis #MECFS

Gabapentin or Pregablin? #MyalgicEncephalomyelitis #MECFS

First shower of 2026. Only managed to wash lower half. Arms on fire. Hair will have to wait. #MyalgicEncephalomyelitis #MECFS #LongCovid

My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...

The timeless work of Norwegian illustrator Kornelia Paulsen (who no longer appears to be on Twitter or Instagram). 😕 #MyalgicEncephalomyelitis #MECFS

This doctor writes really well about infection-associated chronic conditions. I like how in this post (on Facebook) he distinguishes between permanent "damage" and impermanent "dysregulation". #LongCovid #MECFS

Why, despite all the evidence presented by #LongCOVID, do so many health professionals continue to be dismissive of infection-associated chronic conditions like #MECFS? Moreover, why is it still so difficult to get these gaslighting dogmatists removed?

One of the best and most accurate as well as concise videos on #PEM the core and cardinal symptom of #ME/CFS by The Norvegian ME Association @meforeningen.bsky.social

As far as I'm concerned, #pwME require treatments which target immune and mitochondria dysfunction. Are any forthcoming? If so, will they be approved by NICE for use in the NHS, and when? #MyalgicEncephalomyelitis #MECFS #LongCOVID

'A Momentary Pause in the Act of Dying'. Hillary Johnson writes about hypovolemic shock and low blood volume in Myalgic Encephalomyelitis. hillaryjohnson.substack.com/p/a-momentary-…

"ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection." link.springer.com/article/10.1...

New research paper: 'Abnormal T-Cell Activation and Cytotoxic T-Cell Frequency Discriminates Symptom Severity in ME/CFS' www.medrxiv.org/content/10.1...

I just had a really interesting conversation about Myalgic Encephalomyelitis with Gemini. It was more knowledgeable (and sympathetic) than any of my registered GPs from the last 15 years.

Thinking about taking mushrooms again to fix the persistent downregulation of my immune system and overexpression of inflammatory cytokines. Can any medically minded mycologists say how long a herx response should last? In the past I've had to give up after two or three days.

Although most doctors accept Post-viral Fatigue is a common medical condition, I'm yet to meet one who can explain its pathophysiology. PVFS has been around for decades so why hasn't it been deeply researched? Surely it would shed some light on Myalgic Encephalomyelitis. 🤨

Results from the DHSC's ‘Women’s Health – Let’s talk about it’ survey are in the news again today. 100,000 women in England responded. More than 4 in 5 (84%) said they weren't listened to by HCPs and their symptoms weren't taken seriously or dismissed. gov.uk/government/cal…

It's odd that most drs have no problem accepting Post-viral Fatigue but they respond with a completely different attitude when it develops into a chronic condition like Myalgic Encephalomyelitis. Do they just run out of sympathy or does bps brainwashing kick in?

My teenage daughter's fate hangs in the balance. Will her Post-viral Fatigue fizzle out or will it develop into a chronic condition like Myalgic Encephalomyelitis? One thing's certain, the medical profession has nothing to offer her that will prevent the latter from happening.

A commitment by NHS England to review ME services sounds like a way to placate patients and further delay meaningful change. If they were serious about implementing change, they would have done so in 2021, immediately after the release of NICE guidelines.

With the release of the ME/CFS Delivery Plan delayed again, it's obvious this government has no intention of providing meaningful support for pwME, despite the lip service paid by various MPs. The government cannot be seen to favour one group of chronically ill patients while persecuting the rest.

I suspect this government has delayed releasing the Delivery Plan for Myalgic Encephalomyelitis for the same reason ME isn't mentioned in the Get Britain Working White Paper: ministers don't want to acknowledge the high number of chronically ill people eligible to receive benefits.

Teenage daughter has been diagnosed with Post-viral Fatigue Syndrome which is obviously a cause for concern given my medical history. Talking with her GP, what struck me was that nothing has improved since I approached him in a similar situation 14 years ago. 1/2

Dear 🇬🇧, Where I come from, one medical emergency is all it takes to bankrupt a family and put them out on the street. Don't ever give up on the NHS. #SOSNHS

Hi Looking to connect (and reconnect) with people who understand very severe ME, when health allows. Woman of few words (not by choice). Appreciate follows.

✨This petition will close TOMORROW, Nov 15!✨ We're over 7k-- next stop 10k! In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses. Sign & share widely! US signers: lnkd.in/e99rsvdT International signers: lnkd.in/e3TpjnTE

This will be my start to use this platform. I’d like to start by introducing my new photo project of documenting my life living with severe #MECFS. I have thought about ways to advocate, and doing it through photography is the best way for me. 1/7

A list of 600+ people, some of which may be familiar (look in the “About” tab for the list, otherwise you just see all of their posts): bsky.app/profile/did:...

When you’re chronically ill - your baseline is everything. You will protect it at all costs. Non disabled people can’t understand how much independence and autonomy means to us. Whatever small amount we have left - is priceless. That’s why we don’t take necessary risks. We know what’s at stake.

It is crazy that patients are still being pushed into therapy that will make them worse. Please sign the petition. chng.it/mXFzY79BQZ

I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.

Karen wore both her day job hat and her campaign hat for this piece on narratives surrounding ME and Long Covid. Please read! #ThereForME #pwME #pwLC open.substack.com/pub/therefor...

For the newbies, one of the great features on here is that when someone has tried to quote-post dunk on you, hit the … and select “detach quote” and nobody will see the post or who wrote it and they will look like an asshole. (Blocking works like this too.)

I have started a Starter Pack for ME and Long COVID. 💙 It includes some mutuals with other packs but also some new faces too. :) Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙 go.bsky.app/6R7bqc7

For those newly joining Bluesky: Here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community. Not comprehensive, but maybe helpful to get you started. go.bsky.app/LciucLP

“Our study of #MECFS symptoms in two cohorts with different recruitment strategies demonstrates that…a clinically significant group of individuals with #LongCOVID exhibit a phenotype consistent with #MECFS” www.medrxiv.org/content/10.1...

Can I propose a BOGOF-type amendment to the Assisted Dying Bill that allows terminally ill patients to select a doctor, who has gaslighted or mistreated them in the past, to be euthanized alongside them?

Today (8 August) is Severe ME Day. It's a day when we remember people who've lost their lives to ME and think of all those who are still suffering from the most severe forms of #MyalgicEncephalomyelitis. Vid link below to learn more. #SevereME #severeMEday www.dialogues-mecfs.co.uk/films/severe...

When you get #MECFS you also typically suffer a catastrophic loss of trust in the healthcare system. The safety net you thought was there doesn't exist and you keep on falling and falling.

People with #MECFS don't choose to end their lives because they're deconditioned. They do so because they experience unbearable suffering from a physical condition for which there is no cure and which incredibly many doctors still know nothing about. Condolences to friends and family.🕯️

I recently obtained a printout of my medical record to renew my Blue Badge and somewhere in it my GP has written "POTS not typical of CFS", even though NICE recognises it as a common comorbidity and 3 separate ME specialists have diagnosed it. Fvcking useless. 🤦 #MECFS #POTS

Imagine discovering those who you thought were meant to take care of you don't actually care and don't even believe you. This is the reality faced by nearly all #MECFS patients when they approach their health provider for help.

I'm sorry to say that if your #LongCovid develops into #MECFS, no one is coming to save you. It's very unlikely you'll even see a doctor who believes you're unwell. Be prepared for your life to change utterly. Do everything you can to avoid getting it.

With the discredited Lightning Process once again the focus of media attention, it's a good time to reshare the words of Prof Brian Hughes. #MECFS #LongCovid

Somebody nominated me for a healthcare award for the work I’m doing for people with long covid and ME/CFS. I would appreciate if you could vote for me. Not because of me but because long covid and ME should be on a stage in the limelight in an evening dress with a blue rose. viktor-award.ch

Press briefings about #MECFS should emphasize the severest form of M.E. I'm not sure how it's come about, but my sense is that charities have sometimes understated its severity, as though they don't want to frighten anyone. We should be scaring the bejesus out of people. M.E. is terrifying.

In its mildest form, #MECFS is still widely misunderstood as fatigue, despite being debilitating. In its most severe form, M.E. is ignored by medical professionals and rarely represented in the media. Patient organisations have got to get better at communicating with the media.

Hopefully one day people with severe #MyalgicEncephalomyelitis won't have to choose death to end their suffering because there will be effective treatments and knowledgeable clinicians to look after them, just as there are for other diseases. #MyalgicEncephalomyelitis #MECFS

How is it possible in this day and age for patients to be so badly failed that they feel like they have no choice but to end their own lives? Why isn't this failure a national scandal? The media and medical profession are indifferent to the suffering of #MECFS patients.