#MyalgicEncephalomyelitis(M.E) sufferer. I had a virus & didnt recover. Are questions usually rhetorical? I cannot give blood: bit.ly/2SCpSHz
Joined July 2011
- Tweets 10,363
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868 Photos and videos
Heath retweeted
Jun 4
“People with ME have sadly had to endure far too much disbelief and delay.”
Clip of Dr Hans Kluge, WHO Regional Director for Europe, opening the @Invest_In_ME 2026 International ME Conference #IIMEC18.
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Heath retweeted
May 23
Dr Nigel Speight explains why the term ME carries more weight than “Chronic Fatigue Syndrome” and how it would be like renaming Alzheimer’s “Chronic Forgetfulness Syndrome”.
He also describes how a boy’s CFS diagnosis was weakened, leaving the family open to prosecution.
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May 21
It's beyond time we stop saying M.E is debilitating. What it is is disabling and life threatening. Maybe those words from the likes of healthcare professionals would alter perceptions and opinions?
May 21
BBC Morning Live covered the new £4.75m UK government funded #MEcfs DNA study yesterday, which will sequence 6,000 samples as part of the wider DecodeME project.
Unfortunately @DrOscarDuke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.
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Heath retweeted
Alexa show me a doctor who has not the slightest clue of ME.
Fatigue isn't actually the defining symptom of ME. Which is why conflating it with chronic fatigue is dangerous and wrong.
May 21
BBC Morning Live covered the new £4.75m UK government funded #MEcfs DNA study yesterday, which will sequence 6,000 samples as part of the wider DecodeME project.
Unfortunately @DrOscarDuke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.
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Heath retweeted
May 20
Caroline Kingdon speaking about functional impairment and mortality in #MECFS
Biobank research has shown people with ME/CFS to be more functionally impaired than people with MS. And between 2001–2016, ME/CFS was mentioned on 88 death certificates in England and Wales.
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Heath retweeted
May 13
I've always thought it's one of the biggest medical scandals of the new millenium, not just the current century.
May 12
Today is #MEAwarenessDay
ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century. They’re right.
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Heath retweeted
A really important letter.
It is beyond high time that the unscientific minimising and dismissal of #MECFS #LongCovid and other related illnesses stopped.
@rcpsych please do not platform bad faith actors whom the community does not trust.
That should tell you everything.
🩵On #MEAwarenessDay we are sending an open letter to @rcpsych calling for alignment with current evidence.
Supported by 20 organisations. 35 advocates, clinicians & academics!
In democratic spirit we are offering a public sign-on opportunity 🔗👇️
#RCPsychIC #Garner
ALT A letter from Long Covid Advocacy to the Royal College of Psychiatrists and President Elect Prof Subodh Dave discusses integrating patient experience into ME care and highlights concerns about psychiatric-led approaches. #mecfs #meawareness #RCPsychIC #pwME
ALT A letter from Long Covid Advocacy to the Royal College of Psychiatrists and President Elect Prof Subodh Dave discusses integrating patient experience into ME care and highlights concerns about psychiatric-led approaches.
ALT A letter from Long Covid Advocacy to the Royal College of Psychiatrists and President Elect Prof Subodh Dave discusses integrating patient experience into ME care and highlights concerns about psychiatric-led approaches.
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Heath retweeted
May 12
The world's first genomic study into ME, or Myalgic Encephalomyelitis, has been announced.
Researchers are hoping that by building a genetic map of the illness, it will help pave the way for a future diagnostic test and even treatments.
But charities have warned that there is more to do and this must only be the start.
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Heath retweeted
ME/CFS is a seriously disabling condition impacting at least 67 million people.
Medical education is lacking in most countries.
Patients are denied the care they deserve.
Consequences are significant.
Share your story and the World ME Alliance's Medical Education Hub #EducateME
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Heath retweeted
May 12
Today is #MEAwarenessDay
ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century. They’re right.
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Heath retweeted
May 9
“So what you’re really telling us is that everything we’ve been taught in our training as nurses is wrong for this condition.”
Dr Nigel Speight describing a nurse’s reaction after he explained how to care for a patient with severe #MECFS.
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Heath retweeted
Apr 30
For ten years, I've been pushing back against problematic research suggesting that ME, ME/CFS, Long COVID and related illnesses are psyhosomatic, "functional," etc. I'm continuing the project through December. If you'd like to help out: crowdfund.berkeley.edu/proje…
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Apr 1
Where's Arne Slot; where's Richard Hughes; where's Steven Gerrard & where's Sebastian Kehl?
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Heath retweeted
Mar 30
In case you missed it, we have a downloadable factsheet (that can be shared with healthcare professionals) summarising immune system abnormalities in ME/CFS (tinyurl.com/mecfsimmunity) and also an easier-to-digest version (tinyurl.com/immune-mecfs)
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Heath retweeted
Mar 28
From @onelife_livedwell on IG:
The PACE trial shaped an entire research paradigm, but the methodology tells a more complicated story. This is what happens when lived experience and research conclusions don’t align and why how we define things matters so much. #mecfs #pwme
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Heath retweeted
Mar 28
As medicine has psychologized and physically harmed ME/CFS and PAIS patients and ignored the consequences of long SARS since long before LC,
any acknowledgement should start with naming the historical failure that precipitated LC's lack of recognition.
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Heath retweeted
I teach the fraudulent PACE trial as how not to conduct research in my research methods course. My students ask how this demonstrated slop got into and stays in a prestigious journal. Maybe someday I’ll have @TheLancet editors in as guest speakers to tell my students themselves.
Mar 25
Retraction—Today, we retract an unsigned 1977 commentary suggesting talc powder containing asbestos was not harmful. The Lancet was informed that the author had undisclosed competing interests and breached publication ethics. /4
ALT Social media card dated 25.03.2026. The text reads, “Retraction—Today, we retract an unsigned 1977 commentary on the safety of asbestos in talcum powder. We thank David Rosner and Gerald Markowitz for their rigorous investigation and alerting The Lancet that the commentary was written by a paid consultant of Johnson & Johnson—representing undeclared competing interest and a clear breach of publication ethics. Our editorial processes have evolved significantly since 1977 to improve transparency, ethical standards, and scientific integrity. In our view, had our editors at the time known of this situation, they would not have published this piece. Therefore, we are now retracting it.”
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Heath retweeted
Mar 27
Dr Charles Shepherd (@MEAssociation) explains how in the 80s and 90s psychiatrists claimed #MECFS was due to “deconditioning” and “abnormal illness beliefs”. Graded exercise therapy made many patients worse, with some ending up in wheelchairs. It was only removed by NICE in 2021.
Mar 26
Powerful clip @johnthejack on the BPS model for #MECFS
It meant he was “an unreliable witness” to his own body, he could get better if he just changed his thinking and his behaviour. People viewed him differently and the responsibility to recover was put onto him.
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Heath retweeted
Mar 26
Powerful clip @johnthejack on the BPS model for #MECFS
It meant he was “an unreliable witness” to his own body, he could get better if he just changed his thinking and his behaviour. People viewed him differently and the responsibility to recover was put onto him.
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Heath retweeted
Science around #MECFS is moving faster than ever before. Across the world, serious efforts are accelerating to understand its biology, improve diagnosis, and open paths toward treatment. Please do not lose hope. Real progress is coming, and the future holds promise. #HopeForMECFS
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