Michiel

@murtoz

Horizontal advocate for #pwME. 🇳🇱 in 🏴󠁧󠁢󠁳󠁣󠁴󠁿. Ally. Cis. PwME/LC. Volunteer with @meactionscotland.bsky.social. He/Him. #SaveSavannah #BIPOCLivesMatter #TransLivesMatter #EndGenocide #CovidIsAirborne #YallMaskin #CleanTheAir

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Michiel@murtoz· 6d

Amen. I think Certain Hospitals (RDUH) are worse than others. But A Lot Of Hospitals (All?) are dangerous if you have Severe #MECFS. Saw a fb comment posted yesterday by yet another woman with severe ME starving at RDUH because "all her tests are normal." She can't fucking SWALLOW or SPEAK.

Screenshot of a FB comment:
"I’m currently in hospital for the 6th time in a month due to dehydration/ malnutrition caused by severe MECFS 😢
I’m now in the same hospital that caused Maeve Boothby-O'Neill death a couple of years ago - and despite me calling Martha’s Rule and using Maeves name in emails to PALS and chief executive (and sent copies to GP and local MP) as I believe I’m heading in the same direction, doctors are actively refusing to follow NICE guidelines and refusing my constant requests for NG tube as “not critical enough” (as they are relying on normal blood tests)
I’m only able to move one finger , can’t swallow anything for 10 days and now can’t talk, using eye gaze to type to speak/ message on phone but even that’s exhausting…
I’ve now had enough of medical negligence as only plan is “monitoring and allowing you to rest” so this morning I’ve requested self discharge as feel I’m going to die within next few days and want that to happen at home - but apparently gotta wait for consultant review and psych team review first … everyone is implying I’m refusing to move / eat / talk due to mental health and attention seeking
My GP is trying his best to support this situation but is struggling- he’s now written to a professor/ government advisor who specialises in MECFS so fingers crossed
What can I do to get help? As I’ve done everything I can possibly think of but now I’ve given up using valuable energy to eye gaze text for ward staff as they are very dismissive… 😢😢"

Michiel@murtoz· 14d

Glad I am not the only one who thought this study was shit. A much long list of what's wrong with it on fb www.facebook.com/tom.radcliff...

Post by Tom Radcliffe on facebook

"So this garbage paper on a study done by cranks is starting to leak into the anti-science press (Medical Express and the like). There are many things wrong with it:
1) The HEPA filters were run at an estimated 2 air changes per hour (ACH), when at least 6 ACH are required to be effective, and higher is much preferred. I aim for 10 in my own work.
2) The HEPA filters were not positioned reliably: no engineer was consulted on placement, and they were not fixed in position.
3) The HEPA filters were not monitored so the "researchers" cos-playing scientists in this crank study don't know how often, if ever, they were even turned on. They report that staff said the filters were "usually" turned on.
4) The AIR QUALITY WAS NOT MONITORED, which is the ground truth for studies like this. What you want to know is: will properly positioned HEPA filters running at ASHRAE 241 conforming ACH remove PM2.5 from the air and will that reduce infections as observed in every competently carried out study of this kind?
So the only conclusion anyone can draw from this study is: when cranks cos-play science they produce false conclusions which will be uncritically repeated by the crank community, to the detriment of public health. Not that anyone cares about public health. Ask me how I know this... it's as plain as the sneer on everyone's face.
See the comments in this post for studies that show HEPA filtration, when run at the required speed with competent placement and actually turned on, is *enormously* effective at lowering viral load and extremely effective at lowering infection rates.
Next up: seat belts are ineffective at preventing injuries when you don't wear them. That is precisely the kind of thing this "study" by cranks concludes. Why equip cars with seat belts then? What are you going to do... make it illegal to not wear them???"

Michiel@murtoz· 14d

I'm far from an expert on this and there's a lot of assumptions in the above, but it still strikes me as frankly negligent to do this study without considering air changes per hour let alone building it into your study design. They briefly touched on it as an explanation for their null result, 4/6

Possible reason #4 given by the authors for the supposed null result of their study:

"Fourth, there were also insufficient CADRs. We used the manufacturer-recommended CADR based on room volume. An explanatory study might have used more sophisticated modeling, including frequency and proximity of staff, visitor, and resident interactions and room ventilation levels to determine more precise CADR requirements.29 However, we do not believe that a greater number of HEPA filters, or the increased cost, air cooling, and noise associated with higher CADR units, would have been acceptable."

Michiel@murtoz· Jun 18

The peonies my wife has been growing decided to be resplendent in pink this year and it is giving us so much joy! #Bloomposting

A photo in landscape orientation of two peonies.
One is perfectly in focus in the centre of the image, the other is in the blurry background on the right. They're set against a backdrop of green leaves.
Both peonies are extremely floof with many layers of petals. They both show a gradient from white petals in the middle of each bloom to a lovely pink for the outer petals. A few of the central white petals have dark pink markings along their outer edge

Michiel@murtoz· Jun 15

I'm joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. I'm proud to support the Open Letter to RCPsych, backed by 58 orgs & 1200 signatories. #HearOurVoices #RCPsychIC 📩 tinyurl.com/46enh82n

Two-page Open Letter from Long Covid Advocacy to Prof. Subodh Dave, President-elect of the Royal College of Psychiatrists, dated 12th May, 2026.

The letter expresses concern over Congress programming framing ME and Long Covid through outdated psychosocial/behavioural models rather than current biomedical evidence. It flags the inclusion of speakers Paul Garner, Alan Carson, and Trudie Chalder, arguing their frameworks risk misaligning with NICE guideline NG206.

The text outlines four demands:

Ensure programming reflects biomedical evidence, not psychosocial models.

Review how speaker sequencing shapes evidence interpretation.

Position patient expertise as independent knowledge.

Align all teaching with NICE guideline NG206.

The letter is signed by a two-column list of 58 supporting organizations (including Long Covid Advocacy, Action for ME, ME Association) and "+ 1200 individual signatures of patients, clinicians, researchers, carers & family members."

Full text of letter available at https://www.longcovidadvoc.com/post/open-letter-update-solidarity-engagement-and-next-steps

Michiel@murtoz· Jun 7

@jamesmurrayldn.bsky.social UK government MUST stop ignoring the AT LEAST 100k people with #SevereME or #VerySevereME. The level of suffering is unfathomable yet DHSC has postponed merely discussing *WHETHER* a service should be set up til summer 2027. Read these words, find your conscience, ACT!

"Caroline’s condition has continued to deteriorate rapidly, and we are now in an extremely desperate situation.

She is now completely bed-bound and unable to use the bedpan, meaning she has to wear adult nappies and remain on bed pads at all times. She is living in complete darkness 24 hours a day due to the severity of her neurological symptoms and extreme sensitivity to light and sound. This is no way for anyone to live.

Most heartbreakingly of all, Caroline has not been able to see the children at all for over a week now. They miss their mum desperately, and watching them lose those precious moments with her is unbearable.

Over the last few weeks we have contacted and spoken with several specialists and hospitals in London, desperately trying to find someone willing and able to safely admit and investigate Caroline’s complex condition. Sadly, despite fully explaining the severity and urgency of the situation, we have repeatedly been told they cannot guarantee a safe admission or manage her care in a multidisciplinary way.

Even more concerning, the specialists we approached were unwilling to collaborate together during the same admission, despite Caroline clearly needing coordinated care across neurology, rheumatology, autonomic dysfunction, ME/CFS, MCAS, hEDS, POTS and possible Craniocervical Instability (CCI)."

Source: https://www.gofundme.com/f/get-caroline-better-for-her-kids-and-herself?modal=updates

Michiel@murtoz· Jun 4

Casual eugenics. www.mind.org.uk/news-campaig...

"- The vast majority of people currently protected by the DoLS safeguards
system in the UK will likely see their existing checks and independent
inspections cancelled.
- The Court implies that individuals with profound cognitive disabilities cannot be "deprived" of liberty because their condition limits their ability to experience it—a view that devalues their fundamental rights.
- The Court has suggested that in borderline cases, for a deprivation of liberty to exist, a care setting must closely mirror the extreme confinement of a prison cell.
- If a vulnerable person appears passive or does not actively protest their
arrangements, the law may recognise this as "consent" — even if they are subjected to routine physical restraint or chemical sedation or have never known a life without a high level of restriction. "

source: https://www.mind.org.uk/news-campaigns/news/the-biggest-rollback-of-disability-rights-in-a-generation-charities-respond-to-supreme-court-ruling/

Michiel@murtoz· Jun 4

Ah the cult of JE. I only go there if I am after something specific nowadays. Bumped into this little gem the other day. What planet is this guy on!? I actually got sensible treatment for my pots from the NHS while for ME they just shrug (at best). With "allies" like these, who needs enemies...

Post by Jonathan Edwards, Senior member (voting rights) dated feb 3, 2026.
He first quotes a post by lelelemonade:
"Right, you want them to get medical care but you don’t want them to do advocacy, use the terms that make their illness legible to others, oppose the creation of specialized centers that would cater to their needs, marginalize the “fringe physicians” who treat them… "

And then replies as follows:
"I am very keen for people with ME/CFS and their carers to be involved in advocacy but not advocacy that promotes pseudoscience. Terms like MCAS, POTS and hEDS do not make illness legible to others. Nobody knows what they mean. The main effect of these terms is to promote ridicule amonsgt the general population who have a pretty good idea that they don't mean much.

Note that this is in complete contrast to ME/CFS, which does have a useful meaning.

Th specialised centres set up to deal with MCAS and hEDS are, as far as I have seen, pseudoscience outfits that may cater for the 'need' to have a list od diagnoses (I would have thought one would do) but there is no evidence for them catering for any medical needs that I can see. Maybe they provide drugs that might help but we have no way of knowing because they never do proper trials."

Michiel@murtoz· Jun 3

and did you stop at my original reply to consider if maybe you should do some allyship activities for disabled people? Have you looked at the implications of that ruling? Same judges from the FWS bullshit. They are coming for all of us. We're stronger together. www.mind.org.uk/news-campaig...

Michiel@murtoz· May 23

Cis followers of mine, you're up! The UK is now officially an apartheid country (I mean, it always was but it used to be the quiet part, now it's official policy). Please show solidarity to our trans friends and confuse the fuck out of the haters.

Michiel@murtoz· May 22

ok definitely time for some #bloomscrolling because wtaf, world!?

A square photo of a cluster of honeysuckle flowers in bright bright yellow.
Some smaller flowers are in the background as well as a bunch of brown branches emanating from the center, and some green leaves dotted around the edges

Michiel@murtoz· May 20

Yes your statement is probably true but it becomes misinfo when you leave out this bit.

We found that patients who were hospitalized for COVID-19 had a greater risk of developing long COVID – and of having longer-lasting symptoms – compared with people who had not been hospitalized. However, because the vast majority of COVID-19 cases do not require hospitalization, many more cases of long COVID have arisen from these milder cases despite their lower risk.

Source: https://www.cbsnews.com/news/long-covid-mild-cases-study/

Michiel@murtoz· May 20

Sounds so nice when you say it like that but it completely ignores the below. Stop spreading misinfo for the billionaires, dude.

We found that a staggering 90% of people living with long COVID initially experienced only mild illness with COVID-19. After developing long COVID, however, the typical person experienced symptoms including fatigue, shortness of breath and cognitive problems such as brain fog – or a combination of these – that affected daily functioning. These symptoms had an impact on health as severe as the long-term effects of traumatic brain injury. Our study also found that women have twice the risk of men and four times the risk of children for developing long COVID.

Source https://www.cbsnews.com/news/long-covid-mild-cases-study/

Michiel@murtoz· May 16

A signed deal you say? Like this?

Neville Chamberlain standing beside an airplane at Heston Aerodrome, on his return from Munich on 30 September 1938 holding up a piece of paper to show to the crowds surrounding him.

The piece of paper is the Anglo-German Declaration (the resolution) to commit to peaceful methods signed by both Hitler and himself.

A deal. A signed deal.

Michiel@murtoz· May 15

A picture of a cat in the corner of a room, with mathematical equations on the walls and floor.

It says "Meanwhile inside the box, Schroedinger's cat plans its revenge" but cat is crossed out and replaced with a handwritten "Hanta Virus"

Michiel@murtoz· May 11

Not because of terminal or untreatable illness. But because of a refusal to give the support needed. This is literal eugenics.

Poor, lonely, and homeless Canadians are opting for state-assisted deaths due to their circumstances, a major report has found.

The first significant report into Canada's 'Medical Aid in Dying (MAiD)' system in Ontario found vulnerable people face "potential coercion".

Deaths identified in the report included a man grappling with addiction, a man with mental illness who previously tried to end his life, and a woman who couldn't access housing.

A disproportionate number of people who chose assisted death when they were not terminally ill – 29 per cent – came from Ontario’s poorest areas.

A member of the Committee examining the issue said: “This worrisome finding suggests that MAiD could be the option of least resistance and be used to end lives when social policies have failed them.”

source: https://care.org.uk/news/2024/10/poor-lonely-and-homeless-opting-for-assisted-death-in-canada

Michiel@murtoz· May 8

Understood (and I need my bubble burst if it is not based on facts!) I went by this study which used 5 of the nukit torches. www.nature.com/articles/s41.... Their findings were >98% of pathogens killed within 15 minutes in a 32m3 room. Are you saying that's wrong?

Line graph showing percentage of pathogen remaining on the Y axis (logarithmic scale, from 0.1 to 100%) and time from lamp switch on (min) on the x axis, ranging from -50 to +50.

The blue line shows 5 lamps, is around 100% from -50 to 0 minutes on x-axis, and then drops hard to around 1% at 10 minutes and then fluctuates between 1 and ~5%.

The green light shows a single lamp and drops from 100% at time 0, to 10% at 5 minutes, and fluctuates around 8%.

Source: figure 2 in https://www.nature.com/articles/s41598-022-08462-z

Michiel@murtoz· May 7

I have friends with pre-covid vaccine injury that led to ME/CFS and this has been recognised long before covid Vaccine injury is real, even more neglected than ME/CFS or Long Covid, because people, many scientists included, refuse to talk about it. In Putrino's words: it's considered "radioactive".

Horizontal bar graph from the European ME Association's 2024 report

Most common triggers:
- infectious disease: 58%
- I do not associate the start of my illness with any particular event / I am not sure: 18%
- traumatic life event/Stress: 12%
- Accident / injury / surgery: 7%
- Vaccine/Medicine/Procedures: 7%
- Pregnancy/birth: 3%
- underlying disease/condition: 2%
- pesticide/mold/posion/heavy metal: 1%

Figure 4: Triggers of ME/CFS (n = 11274)

Source: https://europeanmealliance.org/emea-pan-european-survey-uk.shtml

Michiel@murtoz· May 6

@sharonhodgsonmp.bsky.social when will you do something about this dystopian reality that UK charities invest significantly more into good research for ME/CFS than the UK government? Considering we are here due to the UK government systemically underfunding #ME/CFS research for decades.

Bar graph from crunchme.org

The UK Government has significantly underfunded ME/CFS research relative to its burden over a long time period.

Average UK Government research funding for select diseases (2015-20 Mean, £m)
Y-axis: Annual Average Funding (£m)
X-axis:
Parinkinson's: £8.8M
IBD: £5.7m
MS: £3.7m
ME/CFS: £1.0m.

Inset table: totals for 2015-2020
Parkinson's: £53.0m
IBD: £33.9m
MS: £22.3m
ME/CFS: £6.0m

Data source: White, P., McGrath, S., Anatol. (2023)
Patient-led analysis of MRC and NIHR data

CC BY 4.0

Source: https://crunchme.org/visuals/2025-01-06-02

Michiel@murtoz· Apr 23

This is amazing! An actual centre of expertise with advice & support for #pwME, home care for all, even specialised long term residential care aimed at severe and very severe folks! Additionally, meaningful training for carers. @tessamunt.bsky.social this is the type of thing UK should be doing!

machine translation of excerpt from article in quoted post

"The support services currently being developed are intended to serve both those living at home and those receiving inpatient care from Caritas Socialis. The "CS Nordlicht at Home" project will be open to those with mild to moderate symptoms who have at least care level 1 and live in Vienna. Specially trained staff from the fields of home care, nursing assistance, nursing care assistance, and registered nurses will be deployed. For those severely and very severely affected, a specialized team ("CS NORDLICHT MOBIL") is currently being established.

Concept for Severely Affected Individuals

The "CS Nordlicht Wohnen" concept, also in the planning stages, involves long-term residential care within CS Caritas Socialis facilities for ME/CFS patients with severe and very severe symptoms. The concept includes, among other things, a soundproof and light-dampened environment.

Unlike the advice center, all of the care options are intended for those affected who live in Vienna, although further initiatives are hoped for: The project is also intended to become a "reference model for integrated care of people with ME/CFS," it was stated. Further development also depends on future funding, which is currently still pending, CS Caritas Socialis emphasized.

Course for Volunteers

A special advanced training course for volunteers has already begun, specifically addressing the ME/CFS illness and the unique challenges of providing support. A prerequisite is completed training in life, death, and bereavement support.

Caring for people with ME/CFS means a "radical" patient-centered approach and close collaboration among all disciplines – "especially in their own homes," said Andrea Schwarz from the CS Nordlicht project management team. "What's crucial is not just the professional expertise, but the attitude with which we approach these seriously ill individuals to make quality of life possible in the first place."

Michiel@murtoz· Apr 20

If you are still not convinced, this is the same sarah tyson who believes she is free to call us hysterical when our feedback (that she asked for!) doesn't meet her preconceptions; and firmly believes questionnaires cannot cause PEM. MEA are not on our side. www.s4me.info/threads/open...

Several members spent considerable time spelling out their concerns about the PASS questionniare, which is intended to 'measure' PEM.

Prof Tyson was willing, at first, to join our discussion of PASS. However, she suddenly turned on members with a completely unprofessional, unwarranted and shocking attack on everyone involved in the discussion.

In response to a suggestion that the project might be unsuccessful, and valid concern that badly designed PROMS can cause harm to pwME, Prof Tyson said:

"Don’t be silly. You haven’t actually presented any evidence that the project would be unsuccessful, or any rationale why completing a questionnaire would cause harm, which is clearly implausible."

After providing links to some of her own research work on stroke rehabilitation, Professor Tyson continued:

"I am not engaging with this thread any further now. I had joined it in anticipation of a constructive, critical discussion which could help progress the project and use of measurement tools in ME. Instead, I have been met with diatribes of, frankly, hysterical projection, catastrophising, conspiracy theories, overt hostility and insults. This is the sort of nonsense that given people with ME such a bad reputation, and I have no interest in being further involved."

source https://www.s4me.info/threads/open-letters-to-the-uk-me-association-trustees-about-a-research-project-developing-proms-led-by-sarah-tyson.37937/

Michiel@murtoz· Apr 20

And if you think I may be a little harsh? Read this thread. These proms are designed to justify our vile bacme clinics. Meaning our abusers are *still* in charge of our care. Funded by the largest supposed patient charity in the UK Trish sums it up nicely here I think. www.s4me.info/threads/the-...

Post by Trish, Moderator at the Science for ME forums.

Wednesday at 9:39 AM
> Sean said:
> Well, the identify and quantify bits are okay, the 'understand' bit is worrying.

The quantify bit of this project is the bit that probably concerns me most. The intention is clearly to find ways to demonstrate value for BACME clinics by generating numbers that they can push in their required direction.

But the numbers are meaningless when the questions don't and can't capture reality because they are so badly designed, and when they try to add together scores that are not measuring anything meaningful, let alone on a linear scale.

source: https://www.s4me.info/threads/the-me-association-clinical-assessment-toolkit-me-cat-and-app-autonom-e.47303/page-4#post-686864

Michiel@murtoz· Apr 14

it's flawed apparently. 32 out of 80 participants dropped out... I consider Todd one of if not the world leading expert on PEM, and he is of course author on at least some of the previous papers on 2-day CPET for pwME.

Two tweets by Todd Davenport

"Todd Dave... @sunsopeni... - 4h
How do you get around $600k in
federal funding to study 80 patients
and 40 controls...and the headline
study that gets published involves
way less than that?

Todd Dave... @sunsopeni... - 4h
Even *reading the abstract*, there’s
documentation of a glaring rookie
mistake my students wouldn’t pass
my class for making that is
somehow allowed to be repeatedly
committed by the same group of
senior scientists and their enablers
at CDC and NIH, which confounds
the analysis."

Michiel@murtoz· Mar 31

👋used to drive past there regularly on the way to Gloucester when I lived in Swindon. Been in Scotland >5 years now and have a long list of places I'd love to visit, mostly hilltops. I think I'd start with Dunadd, the little knoll in the middle here, where the kings of Dalriada were crowned

A photo of dunadd in early morning light.
The left foreground is a big field green with grass. The right hand foreground has a small burn in it, brown rushes either side, and branches of a scots pine peeking into the picture from the right.
There's a line of distant hills on the horizon, with a singular hill much closer by silhouetted in the middle.
The sky is mostly cloudy with a few clear spots. The clouds vary from the peachy and pink tones of sunrise in Argyll, to dark almost purple - it looks like it might rain soon in the distance.

Michiel@murtoz· Mar 24

B&W are spot on that govt is just manufacturing "consent" for the next eugenicist law they want to pass. They keep targeting all the vulnerable and minority groups while doing nothing to address corporations or big business. Fed up of having corp profits prioritised over our childrens' wellbeing

But one extraordinarily important change did not feature in the current SEND consultation, which finishes at the end of May.

This is the proposal to drastically reduce access to SEND tribunals, where parents can challenge the decisions of local authorities.

What makes this especially outrageous is that a staggering 98.9% of SEND tribunals – yes, you read that right -currently find in favour of the parent.

The parents of one affected child launched a legal challenge against the failure to include tribunal changes in the consultation. They were informed last week by government lawyers that the secretary of state had chosen not to consult on this measure, as the decision had already been made.

This, it seems, is what Labour means by putting affected people at the heart of decision making.

An organisation called Measure What Matters has written a piece for Special Needs Jungle about the consultation, which we very strongly recommend claimants read.

One of the shocking claims is that Labour are paying £90 million to a PR firm to promote their SEND reforms.

But most important of all is the process that the organisation calls “manufactured consent”:

“It is what happens when those in power do not discover public support — they construct it.

Michiel@murtoz· Mar 6

with alt - everybody needs to see this.

A horizontal line graph called "Healthy life expectancy at borth has declined in all four UK nations"
The x axis shows the years 2014 - 2024.
The y axis shows life expectancy and goes from 58 to 64.
The four countries of the UK show up as follows:
- England (grey line): life expectancy hovers between 63 and 64 from 2014-2020 and then steeply drops to just over 61
- Northern Ireland (green line): life expectancy hovers just below 62 from 2014-2020 and then drops to 60.5 in 2023 and goes up a little in 2024 but still clearly below 61
- Scotland (blue line) starts at 62 in 2014; hits 62.8 in 2016, drops to just below 62 in 2020 and then falls off the cliff to 59.5 in 2024
- Wales (red line). Steepest drop of them all. Hovers just below 62 from 2014-2020 and then nosedives to 59 in 2024.

"Guardian graphic. Source: ONS. Note: year shown is last of three years in rolling three-year average"

Michiel@murtoz· Feb 19

#SaveSavannah #MECFS #SevereMErgency Calling on all #pwSevereME and allies Savannah's team have just posted this on the fundraiser. If you know of anywhere, please add to the web form here: tally.so/r/81KxGO The insanity of considering to fly a very ill person abroad due to inaction of UK Govt!!!

"Thank you for your ongoing support for Savannah. Today again we are calling on the community for help.

In the absence of any national database of safe doctors for pwSevereME, we want to hear from you if you could make any hospital recommendations for the (Very) Severe, ideally with a bed Savannah could be transferred to. Primarily in the UK but since we're not sure if this even exists here, we're also open to recommendations in nearby countries.

For instance, a German hospital gave Dutch pwVerySevereME Sanne TPN and we will be reaching out to her team. Open to suggestions for NHS and private doctors alike.

If you know of anywhere, please fill in this very short form:

https://tally.so/r/81KxGO. QR code with the link attached too.
We have thought long and hard about this, as there is a huge inherent risk in such a move for even further deterioration, but Savannah feels we have to consider all options to get her out of QEH before they kill her.
To be clear: we are not asking for “miracle” doctors, ones with wild “cures” or alternative treatments. We're simply asking for doctors who acknowledge the physical causes of ME and won't try to psychologise her.
We know what medication keeps Savannah alive. We just need to find a safe bed with a safe consultant who will reinstate those meds (both her IV Cyclizine and pain relief), and provide a stimulus-free environment for her to recover enough to have TPN installed."

Michiel@murtoz· Feb 18

in the absence of accurate medical records and competent diagnosticians, we have to rely on patient surveys like this one of over 11k pwME. Source europeanmealliance.org/documents/em...

Horizontal bar graph showing "Most common triggers

Infectious disease: 58%
I do not associate the start of my illness with any particular event / I am not sure: 18%
Traumatic life event / Stress: 12%
Accident / Injury / Surgery: 7%
Vaccine / Medicine / Procedures: 7%
Pregnancy / Birth: 3%
Underlying disease / condition: 2%
Pesticide / mold / poison / heavy metal: 1%

Figure 4: Triggers of ME/CFS (n = 11274)

Michiel@murtoz· Feb 12

Most NHS doctors still recommend exercise even when you already have a diagnosis of ME... I think this is the study I was thinking of. pubmed.ncbi.nlm.nih.gov/39804551/ I do remember seeing a table of how many of the ME-like cohort experienced PEM but can't find that now.

part of a flowchart showing at the top "infected [with covid-19] (n=11,785)" which subdivides into:

- "Post COVID-19 ME/CFS - 531 of 11,785 (4.5%)"
- "ME/CFS-like - 4,692 of 11,785 (39.8%)"
- "No ME/CFS Symptoms - 6,562 of 11,785 (55.7%)"

Source: https://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click%20on%20image%20to%20zoom&p=PMC3&id=11968624_11606_2024_9290_Fig1_HTML.jpg

Michiel@murtoz· Feb 11

I don't trust this study. No spoons to read it but two huge red flags - they're clearly unaware of the work of the folks at visible; and they think the PACE trial was valid research instead of the abusive fraud it is. S4ME says they advocate pacing up & had high drop out rates... shorturl.at/gLB3M