Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke Twitter profile

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 year

Wouldn't mask-wearing also reduce the spread of flu, Strep A and RSV? 🤷

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

When doctors say, "Be patient, #LongCovid is new," what they mean is, "It's new to us because we've been able to ignore infection-triggered chronic illness until now." #MECFS #chronicillness #LymeDisease #Fibromyalgia

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

⚠️ Exercise is dangerous for people with ME/CFS and long Covid. ⚠️

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

If people really knew how bad #LongCovid and #MECFS are, surely they'd go to greater lengths to avoid becoming infected. 🤷

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

8 months

"ME has taken everything from me." ~ Celine Corsius 27/1/1991 - 18/9/2023 Please join me in thinking of Celine, a Dutch patient who passed away this morning after suffering from severe ME for many years. Condolences to friends and family. RIP🕯️ (Photo shared with permission.)

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

There's a deeply entrenched hostility in our culture towards those who don't recover from illness.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

'Brain fog' fails to convey what it feels like to live with cerebral hypoperfusion. When the brain's starved of oxygen, thinking feels like pushing a car uphill. And there's a constant sense of derealization, like being slowly drowned; the self gasping for air. #MECFS #LongCOVID

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

7 months

Shocked when I recall that I've had ME/CFS for 13 years and in all that time have never once been offered any medical help. What sort of society just ignores tens of thousands of chronically ill people? More than a political-medical failure, it's a failure of humanity.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

ME/CFS is not rare or mysterious. ME/CFS patients are neglected and ME/CFS research is underfunded.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Don't worry, people with Alzheimer's, ALS, Bell's Palsy, brain tumours, Guillain-Barré Syndrome, Hydrocephalus, Multiple Sclerosis, Muscular Dystrophy, Myasthenia Gravis, Parkinson's, #MECFS and #LongCovid . The BBC had been assured, "the brain has the ability to heal itself." 🤨

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

🧵Long Covid research is advancing at an incredible rate. It's taken LC researchers less than 2 years to reach a point it's taken #MECFS researchers decades to get to - a reminder how quickly progress can be made when enough money/resources are dedicated to solving a problem.1/10

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

8 months

2023: "We didn't know anything about it." 2021:

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

4 months

I can't understand why COVID is spiking again when we've tried so hard to ignore it. 🤷

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 year

Day 4745 of the never-ending nightmare that is #MECFS . Still ill. Still housebound. Still dependent on the care of others. As more people with #LongCovid are discovering, chronic post-infectious illness ruins lives. We all desperately need and deserve treatment. #MedTwitter

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 year

@EmilyMason1192 These?

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

"The factor that REALLY differentiated the long-COVID patients from the healthy controls... was low cortisol. Iwasaki called the low cortisol levels “highly predictive” + noted that they alone were enough to determine who had long COVID + who was healthy."

The Hugely Predictive Factor for Long COVID...is also found in ME/CFS and Fibromyalgia: the...

Low cortisol is "hugely predictive" for long COVID. Epstein-barr virus reactivation, T-cell exhaustion and other immune abnormalities are as well. Each has also been found in chronic fatigue syndrome.

www.healthrising.org

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Medical orthodoxy maintains that most viruses are self-limiting, but science is discovering that more and more viruses are for life, persisting in the host, driving chronic diseases - some we already know about, others still coming to light. #MECFS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

One day - I don't know when, probably not in my lifetime - people who have a chronic illness will be able to go to their doctor and not be told they're anxious or lazy. #MECFS #pwME #LongCovid #MedTwitter #MedEd

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Are we just going to go on and on having mini surges of Covid, leading to more and more cases of #LongCovid and #MECFS until there are more people suffering from chronic illness than not? 🤷

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Nath's back, finding a chronically activated immune response causing neuronal injury in the brains of #pwLC . It explains why it's taken him forever to publish his big #MECFS study, but the good/bad news is he thinks the same thing's happening in #pwME . 1/4

Blood Vessel Attack May Spark Brain Inflammation in Long COVID (and ME/CFS) - Health Rising

Damage to the endothelial cells lining blood vessels in the brain appears to set up an inflammatory response that may be producing cognitive and other problems in long COVID.

www.healthrising.org

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

You shouldn't need to have been a marathon runner or elite athlete to prove that you're sick. People who live sedentary lives are no less deserving of belief and proper medical attention. #MECFS #LongCovid

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

7 months

People with #MECFS who have been disbelieved and gaslighted by medical professionals are some of the most traumatized clients I have worked with.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Healthcare professionals must understand that for most people with #MECFS , 'pacing' isn't a treatment option; it's a way of surviving in the absence of proper treatments. #pwME #MedTwitter #MedEd #teamGP

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Do cancer patients have to be mountaineers and Olympic medalists before they're taken seriously? Asking for people with #MECFS and #LongCovid .

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

9 months

Why is it so difficult for some medical professionals to accept that there's a disease that interferes with energy production? I mean, I know we're still trying to understand the bio-mechanism, but it's hardly the most farfetched physical defect, is it? #MECFS #MedTwitter

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 year

Does it ever cross the minds of GP receptionists that 8am appointments might not be suitable for elderly/disabled/chronically ill patients? I appreciate there aren't enough GPs, but it's a terribly ableist assumption that everyone can get up + get to an appointment at that time.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Some GPs think the immune system is self-correcting, tending towards homeostasis. They view post-infectious illness as just the embers of acute infection that if left long enough will go out - rather than the onset of new pathology that if left untreated risks becoming chronic.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Many ppl with chronic illnesses like #MECFS , #Fibromyalgia + #LymeDisease are too ill to have children. Those of us who've been lucky enough to have children are rarely able to parent as actively as we'd like. Now, ppl with #LongCovid are facing the same thing. 1/2 #FathersDay

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Putting aside the fact that two-day exercise studies demonstrate without a doubt that people with #MECFS have energy-production issues, the idea that these patients are afraid of activity (and are therefore deconditioned) is patently absurd. 1/6

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 months

It was my birthday last week. I was in my mid-30s when I got a virus and didn't recover. Still no knowledgeable medical support or treatment for the underlying pathology. 😩 Please enjoy this cake made by my lovely daughter. 😋 #MyalgicEncephalomyelitis #MECFS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Imagine your car breaks down and the garage you take it to insists the problem is caused by your driving and not a mechanical fault with the car. That is essentially what psychosomatic ideologues and cognitive-behavioural fanatics tell #MECFS and #LongCovid patients. #MedTwitter

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Chronically ill people are more likely to pretend that they're well than pretend to be sick to claim "benefits". #MECFS #LongCovid

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

My 14 y.o. daughter doesn't want to come back from a stay at her aunt's because, "Dad's always ill". Cheers, ME. 💔😢 #SevereME #SevereMEAwarenessDay #MECFS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

What sort of health system denies the reality of a medical condition that's visibly killing a patient, and furthermore, denies them palliative care? I'm not sure if I can ever forgive the psychiatrists who deceived the medical establishment into thinking ME isn't real. #MECFS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

10 months

Very sad to hear Whitney Dafoe has deteriorated again. Please read and look after each other like he suggests. #MECFS #MyalgicEncephalomyelitis

Back In Chains

I’m sorry it has been so long since I have written to you all. I suddenly and unexpectedly got much worse for unknown reasons and I am unable to type. I’m writing this now on Ativan.

www.whitneydafoe.com

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Today is my 15th wedding anniversary. Thanks to #MECFS , we have cried and once again spoken about how bleak the future looks. I curse the corrupt biopsychosocial researchers who have destroyed lives by delaying biomedical research and the development of drug therapies or a cure.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Let's be clear: SARS‑CoV‑2 is just the latest virus capable of causing a complex chronic illness that affects multiple parts of the body. Before #LongCovid this was known as ME or CFS (+ latterly #MECFS ). Unlike LC it's been trivialised + ignored by the media + medical community.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

As a patient and somebody who's worked with #MECFS patients, the most noticeable mental health difficulty I've observed is the anguish and distress caused by the unfounded supposition that ME/CFS is "all in the head", and the medical profession's wholesale acceptance of this lie.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

Why does it take so long to become a doctor if you just attribute everything to anxiety and depression?

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

If people understood #MECFS in the way they understand, say, MS or cancer, perhaps they would be less blasé about getting #LongCovid . #r4today

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Will #LongCovid break medicine's resistance to understanding + developing treatments for all chronic post-infectious diseases? For decades ppl w/ #MECFS , #Fibromyalgia + #LymeDisease (to name a few) have been abandoned by the medical profession. Systemic change is long overdue.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 year

Conclusion: "These findings provide robust support for those who voice caution against using graded exercise therapy in persons with ME/CFS." 👊 #MyalgicEncephalomyelitis #MECFS #LongCovid #MedTwitter #MedEd

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Every "crash" or flare up of symptoms is accompanied by the fear that it might be the start of a permanent deterioration. The uncertainty is terrifying. Some of this could be ameliorated by proper medical support. #MECFS #LongCovid #MedTwitter

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

I guess what many people are discovering lately is something people with #MECFS have known for years - namely that the government doesn't give a toss about people who develop a viral-onset chronic illness.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

13 days

It would be nice to live in a society where providing sick and disabled people with a decent quality of life was considered a desirable political objective. #r4today

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 year

Sorry for repeating myself but yesterday a GP from my surgery phoned to say my blood pressure results were a bit high and that he would text me some exercise information. (I've had #MECFS since 2010; mostly housebound since 2017.) The whole system is completely dysfunctional. 🤦

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 year

@micheal_olainn Virologists? Seems like they might be worth listening to...

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

It looks like the govt's strategy for #LongCovid is basically to ignore it and hope that it will just resolve itself. The same erroneous approach to #MECFS has been taken by the health system, leaving tens of thousands of seriously ill people without any treatment for decades.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Has anyone found a cure for #MECFS yet? I want my life back. #MedTwitter

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Over time my feed has filled with tweets about #LongCovid . It's good that ppl are finally learning more about viral-onset chronic illness, but it's still upsetting when they don't seem to be aware of #MECFS . I respectfully urge sufferers/researchers not to view LC in isolation.🙏

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

‘Living with Myalgic Encephalomyelitis: An Invisible Disability’, a new comic focussing on people’s experiences of living with ME, developed by Dundee academics in partnership with comic artists and people who have ME. Follow link to download. #MECFS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Tweeting with cognitive dysfunction (aka brain fog) sometimes feels like a high-risk sport. 😬

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 months

I'm sorry to be the bearer of bad news but I've just found out that another severely ill M.E. patient (who I didn't know personally) died last month. Condolences to family and friends. May he rest in peace.🕯️💙 #MyalgicEncephalomyelitis #MECFS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

To paraphrase the late Robin Williams: People don't fake being ill; they fake being well. Something doctors would do well to remember. #pwME #MECFS #chronicillness #LongCovid #longhaulers #NEISvoid

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

23 days

Sick people are still sick even if you stop their benefits.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 months

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

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Because there's very little awareness of the seriousness of post-infectious chronic illnesses like #MECFS , ppl are understandably shocked when they fall ill in the prime of their lives. We need a national health campaign like the HIV ads of the 80s to raise awareness. #LongCovid

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 year

What's up, Doc? #MECFS #LongCovid

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

8 months

People are dying from the severest effects of #MyalgicEncephalomyelitis or ending their own lives because of the lack of effective medical support. How is this not a national scandal? Why isn't anyone appalled enough to do something about it? #MECFS #MedTwitter

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

8 months

Meaningful recognition from Maureen Hanson, a molecular biologist and Professor in the Department of Molecular Biology and Genetics at Cornell University, New York. Why do #MECFS patients never hear any such expressions of understanding or empathy from Wessely School members?

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

4 months

Hopefully one day people with ME/CFS will have their #PostOfficeScandal moment. #pwME #MECFS #MyalgicEncephalomyelitis #horizonscandal #C4News #r4today #MedTwitter #BBCBreakfast #bbcnews #NHS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 month

Millie is in 🏥 suffering from gastroparesis caused by severe #MyalgicEncephalomyelitis . Drs insist she has an eating disorder. There's a risk she could starve to death if she's forced to stay there + not treated properly. Pls #BringMillieHome . #DontLetMEDie @gmcuk @RCPhysicians

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

Where are the doctors who want to see the new evidence-based guidelines published? Where are the doctors who want to stop harming patients and start helping them? For the love of god, won't you stand up for people with #MECFS now?

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

I often think about this simple drawing. #MECFS . #meawarenesshour

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Sometimes it feels like doctors are the last to know that #MECFS and #LongCovid are real medical conditions. #MedTwitter

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Try your best not to kill or disable anyone this weekend. 👍😷 #CovidIsNotOver #LongCovid #MECFS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

Well, what a relief to hear ME finally described correctly as a physical illness on a flagship BBC current affairs programme. 👏 #BBC #Horizon #pwME #MyalgicE #MECFS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

4 years

Like Boris Johnson, I was "a man of enormous energy" before I developed ME after a viral infection 10 years ago. However, personality traits count for nothing when energy production is impaired at a cellular level. People who develop post-infectious...1/ #pwME #MyalgicE #MEcfs

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

For decades, neurologists have dismissed the significance of white matter abnormalities/enlarged perivascular spaces in the MRIs of ME/CFS pts. Now, scientists finding the same pathology in the brains of ppl who have died from COVID-19 say it's "perivascular inflammation". 🤔

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

I would prefer not to wait until my autopsy to get a thorough medical examination. 😩 #pwME #MECFS #MyalgicEncephalomyelitis #MedTwitter

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 year

Hey #MedTwitter , how do you explain the stigma and neglect faced by people with #MyalgicEncephalomyelitis , aka #MECFS , for half a century? What are you doing to challenge it? @NHSuk @NHSEngland @pulsetoday @TheDA_UK @gmcuk @BMA_GP @GPonlinenews @TheBMA @JournalGIM @bmj_latest

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

Having #MECFS is like being cast adrift from your life in a small boat. You watch your life fade as the illness takes you further out. You drift for weeks, months, years. Some days the tide changes and your life comes back into view, but you never reach the shore. 🚣‍♂️🚣‍♀️

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

11 years ago I caught a virus and didn't recover. Believe me, you don't want to get #LongCovid or #MECFS + feel like 💩 for that long - with little medical/government support. Wear a mask, get your jabs, keep your distance - do whatever you can to keep yourself + others safe.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

The NHS webpage for #MECFS is harmfully inaccurate + extremely offensive. Describing ME/CFS as 'feeling tired' is like describing cancer as uncomfortable. Furthermore, nowhere in @NICEComms new ME/CFS guideline is 'tiredness' mentioned. Please amend it now, @NHS + @NHSuk . #MedEd

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

🧵1/ Every day this month I'll add a different piece of ME/CFS biomedical research to this tweet so that by the end of #MEAwarenessMonth there'll be a nice long thread of biomedical research papers to keep or share. First up: #MECFS #pwME

Pathophysiology of skeletal muscle disturbances in Myalgic Encephalomyelitis/Chronic Fatigue...

Chronic Fatigue Syndrome or Myalgic Encephaloymelitis (ME/CFS) is a frequent debilitating disease with an enigmatic etiology. The finding of autoantibodies against ß2-adrenergic receptors (ß2AdR)...

translational-medicine.biomedcentral.com

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

4 months

People with M.E. and many people with #LongCovid can't exercise because it makes their symptoms worse. Why's that so hard for some people to understand? Why do they refuse to accept what patients are telling them? It's just weird. #MECFS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

[At 🏥 for trigeminal neuralgia] 👨‍⚕️: Do you have any pre-existing health conditions? Me: ... Yes, ME/CFS. 😬 👨‍⚕️: What's that? 🙄 Me: It's like long Covid but I've had it since 2010. 👨‍⚕️: 1/2

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 year

Instead of forcing sick people back to work, how about finding effective treatments for #MECFS and #LongCovid ? People will naturally return to the work when they're feeling better. #wato

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

It's important to remember that the physical limitations placed on you by #MECFS are not your fault. It might sound obvious but a lot of people beat themselves up about being ill, especially when they're doubted by health professionals.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

There's a palpable sense of frustration among #LongCovid patients at the slow rate of progress of biomedical research + non-behavioural treatment trials. And rightly so. It's been 67 years since the first recorded outbreak of what became known as #MyalgicEncephalomyelitis ... 1/2

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@Dan_Wyke

4 years

Don't worry #longhaulers + #LongCovid patients. If the experience of ppl with #MECFS is anything to go by, there's a psych researcher somewhere busily manipulating the data to "prove" that all you need to recover from your devastating multi-system assault are 12 sessions of CBT.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

1 year

Snippets like this appeared with disturbing regularity in the 80s and 90s. It's a good example of how a scheming, ambitious psychiatrist cultivated alliances with health writers (all the better if they were hubristic, patient-hating doctors) to poison the discourse around ME.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

4 months

1978: "Abnormal muscular fatigability is the dominant clinical feature of the disease. It has been suggested... that this phenomenon might result from damage to mitochondria." #MECFS #LongCovid

Royal Free 1955

@RFH1955

4 months

New blog post regarding the recent mitochondrial abnormality finding in Long Covid. Back to the seventies.... #mecfs #longcovid #cfsme #myalgicencephalomyelitis #myalgice

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

I hope #LongCovid patients are watching what is happening and getting ready to support their chronic illness cousins. If @NICEComms and the medical profession are prepared to push people with #MECFS under the bus, they will in all likelihood try to do the same to LC patients.

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

🔊 So, just so it's clear, Pacing - as understood and used by the #MECFS community - does NOT involve or aim at increasing physical or mental activity at any stage. It's vital GET providers understand this. @NICEComms

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

4 months

1986: "Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms." Maybe someone should tell @guardian . 🧐 #MECFS #LongCovid

Royal Free 1955

@RFH1955

2 years

Ayrshire Post and Troon Herald, Scotland, 12th September 1986. "Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms".

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

People have died from ME, and yet Wessely and his colleagues have been so successful in their efforts to de-medicalise it that some doctors still refuse to accept it's real. Mind blowing. 🙄

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Most #MECFS patients have been waiting for years - decades, in some cases - to receive proper medical care. Why is this tolerated by the medical profession? #r4today #MedTwitter

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

7 months

Brain retraining is just market speak for stress reduction. Sure, we all enjoy feeling less stress - I temporarily felt good after a 15-min yoga nidra today; hell, my mum felt better meditating every day right up until she died of cancer - but it obviously isn't a cure... 1/3

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Twelve years into #MECFS and I'm still waiting for biomedical research to be properly funded, medical education to be updated, and effective treatments to be available for all patients. Chronic post-infectious illness truly is the illness medicine/society forgot. #meawarenesshour

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

Not a single properly designed research study has ever been able to find an association between 'positive thinking' and improved outcomes for people with ME/CFS. #pwME #MyalgicE #MEcfs

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Why haven't researchers worked out what causes the energy production impairment in ME/CFS? Is it simply a matter of insufficient funding, or is the biology of energy production not yet sufficiently understood? We need answers pdq. #MECFS #pwME

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

10 months

What do rehab professionals think when their ill-informed interventions leave #MECFS patients bed-bound or disabled? Do they just move on to the next victim? #MedTwitter

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Before getting #MECFS , I wouldn't have dreamt of spending £20-£30 on a month's supply of a single supplement. Chronic illness is a costly business. 😩 #meawarenesshour

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

A recent US study suggests as many as 3% of the population may end up meeting criteria for #MECFS . The total population of the US is 332.5 million. That's potentially 9,975000 new patients with a chronic post-infectious disease. 😱

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 years

If you're a counsellor, and not medically trained, please don't bring any half-baked theories about the mind-body relationship into the counselling dyad with clients who have chronic complex diseases like #MECFS , Fibromyalgia, Lyme Disease and indeed #LongCovid . #meawarenesshour

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

We need an independent, judge-led inquiry, with the potential for compensation, into the mistreatment and abuse of people with #MyalgicEncephalomyelitis , including children, who have been threatened with removal from families and subjected to harmful exercise therapy. #MECFS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

Nicely observed. Wish I could recall who drew this. #meawarenesshour

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

"A series of recent studies document long term brain-damage in as many as one quarter of all those infected regardless of the severity of the initial disease." 🧠 #LongCovid #MECFS

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Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

2 years

'The number of people not looking for work because they are suffering from a long-term illness has hit a record high' Article inexplicably fails to mention that this is being driven mainly by an increase in #LongCovid and #MECFS . #wato #bbcnews

Record numbers not looking for work due to long-term illness

Nearly 2.5 million are not looking for jobs because of long-term sickness, adding to labour shortages.

www.bbc.co.uk

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