Brian Fog

@georgemonbiot.bsky.social

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights

An amazing response.

The BMJ has now published my rapid response to Miller et al's Opinion piece.

www.bmj.com/content/389/...

On a light red background, text that reads: "When I talk about social abandonment in M.E., I don’t mean the loss of contact and support from many friends and relatives (though that is also a part of the story, as with perhaps all chronic illnesses and even acute ones.) I mean that Myalgic Encephalomyelitis is a devastating and neglected neuroimmune illness with no FDA-approved treatments for which almost nobody but the most affected advocate for progress in research and care. People with M.E. don’t die quickly, but M.E. destroys lives, destroys the possibility of engaging with the world, and eventually #MEkills. Will you join MEAction, World ME Alliance, and other M.E. and IACC orgs in their calls for action on May 12, World M.E. Day? The #MillionsMissing need healthy allies to recognize this is a global health and human rights scandal and join the fight for change."

Friends, please follow @meactnet.bsky.social and other #MyalgicEncephalomyelitis #MECFS #LongCovid #IACC orgs and join in #WorldMEDay #MillionsMissing actions in May and beyond ❤️.

#GreatestMEdicalScandal #TeachMETreatME #pwME #SevereME #MEKills #DontLetMEDie #JohnVsJonVsME

My friend @catofrederiks.bsky.social is launching a fundraiser for her spinal fusion. She has ME/CFS and has severe issues. Please share around, any 5€ is more than welcome 🙏🏻 🙏🏻

This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵

ME triggered by SARS-COV-2 ⊂ LC

Give it a wee Google, Phyllis.

ME ⊂ LC

Wat is PEM, POTS en MCAS - C-support Patiënten met post-COVID ervaren vaak ook PEM, POTS (een vorm van dysautonomie) en/of MCAS

It's worth mentioning that the factsheet on PEM appears on a web page next to similar factsheets on POTS and MCAS (!)

www.c-support.nu/wat-is-pem-p...

So broadly other than asserting PEM = exercise intolerance (which I think is incorrect), and an implicit assumption that LC = ME totally, it's a good handout that will benefit ME patients in NL and their doctors.

There ensues a section with DOs and DONTs of PEM, including a link to the DSQ-PEM questionnaire which is used by Rob Wüst and others. There are descriptions of pacing etc.

...

... And to understand how in addition to physical exertion also mental exercise can cause physical and cognitive complaints to increase.

...

How does PEM arise?

Knowledge about the origins of PEM is lacking and it is also not known exactly how the mechanism works in the body. There are a number of hypotheses, but more (biomedical) research is needed to determine the various complaints that can occur arise after an infectious disease...

• (exhausting) fatigue
• muscle and joint pain
• memory problems
• hypersensitivity to light and sound
• headache
• sadness / irritability
• sleep problems

...

There are over 200 different symptoms submitted by patients with post-infectious disease are experienced. The common symptoms as mentioned below, often worsen with PEM or new symptoms arise.

...

If a patient experiences PEM too often or if it is very severe it can be a long-term or sometimes permanent cause of relapse.

...

Not only previously easy activities, such as climbing stairs, vacuuming or showering can worsen the symptoms. Also stimuli of light, sound, smell or strong emotions can be a trigger.

...

Which symptoms are associated with PEM?

The (long-term) worsening of symptoms can be done immediately after the mental or physical exertion, or 12 to 48 hours then. The worsening can take days or weeks or in severe cases last months.

...

... also referred to as exercise intolerance. PEM plays an important role in reasons why patients can no longer participate properly in society.

...

A majority of patients who suffer from Q fever, Long COVID and ME/CFS experience PEM after minimal effort. It can also occur in people with long-term symptoms after vaccination. The severity and duration of the symptoms that arise are not proportional to the degree of effort

...

What is PEM?

Post-exertional malaise (PEM) is the worsening of symptoms after physical, cognitive and/or emotional exertion. In addition to the worsening of existing symptoms, it can also lead to physical and/or cognitive symptoms that have not occurred before.

...

I'm impressed by this handout on PEM. This is attached along with the information every GP needs to register patients with the Long COVID clinics in the Netherlands.

I will put the salient text below in thread.

Employees with long COVID face pushback in the workplace, research finds From having accommodation requests rejected to struggling to afford care, many of those with long COVID see a dearth of employer support.

“We’re getting by, but we’re … Jesus, I don’t know. We’re probably going to have to tap into our retirement funds. It’s really impacted our life financially, medically, just everything.”

www.hrdive.com/news/employe...

Thanks!

Orthostatic intolerance. Muscle weakness. Heat sensitivity.

So bookmarks aren’t a thing over here?

#NEISvoid in the Netherlands:

Does anyone in NL know of a facility that could provide tube feeding and also accommodate the needs of severe ME (even the stimulation of a home visit is causing crashing)?

CC @uselesspriest.bsky.social

Priorities for Research, Education, Clinical Practice, and... : Cardiopulmonary Physical Therapy Journal litation. Methods: We conducted an international consultation on priorities for long COVID and rehabilitation with people living with long COVID, clinicians, researchers, and other key interest-hol...

Shared research agenda setting in #LongCovid. Grateful to colleagues for being a part of this important open access work: "Priorities for Research, Education, Clinical Practice, and Policy From the Long COVID Physio International Forum." @longcovidphysio.bsky.social journals.lww.com/cptj/pages/a...