Acu Seeds & the Power of Belief: I spent an hour listening to a podcast with the @BBCDragonsDen contestant/director of Acu Seeds about her healing journey with ME/CFS. In her own words she says she was diagnosed with Jan 2019, made a 60% recovery by June, and 100% by Feb 2020. A few important points: 1. data shows that younger people who suffer post-viral fatigue, eg post EBV/Mono, have a 90% chance of recovery within 1 year, it is only around 10% that go on to have symptoms post 12 months.
2. Ascribing recovery to any one factor, is fraught with bias.

Just started listening to a couple of talks by the COFFI group, Collab Fatigue Following Infection - intro by director about choosing to get well after Long-Covid set the exoected psycho-behavioural control over illness tone, so far! coffi-collaborative.com/post/live-semi… Watching these videos does make me feel a bit like a party pooper - for instance, I'd say to this speaker we "feel' tired after activity, we also "feel" tired after flu, whats the difference, explain the biology to me?

I want to share some feedback of trying to continue ME/CFS research: I am struggling to continue in ME/CFS work due lack of funding despite effort & this is a challenge I do not know how to fix on my own. So, I am sharing my experience with all ME advocates/charities/supporters. - I have had the most amazing support over the past few years from the ME community, esp via crowdfunding drives, from charities and private donations, however it is a real struggle to keep going without consistent funding, and I have shared this issue with UK charities this year

Where do I start? PACE Trial authors & co-authors, many co-CBT and GET trialists, suggest ME/CFS NICE guideline review process that removed GET was unfair to them - why, I shall explain below: see their paper here...
jnnp.bmj.com/content/early/… This dates back to 2011, when a UK group published that CBT and exercise therapy (GET) was a successful treatment for ME/CFS - Lancet paper - but they failed to share their primary dataset with the scientific community until forced to by a FOI Tribunal journals.sagepub.com/doi/10.1177/13…

Hi all Q: I recall Sharpe suggesting the media to be responsible for #LongCovid rates - does anyone have a good citation of claims that the media are responsible for increasing Long-Covid risk, rates, eg hysteria, anything on those lines? for book chapter im writing.... thanks guys - probably got enough now - got a quote I can use. Thanks

Oh one for Dr @davidtuller1 error rate less than 2% (I strongly suspect thats wrong) & patients like the diagnosis (I will recount a story in a min below on that) I think I better listen to the full video on this - FND is so on my radar to write about, but time and funding needed

https://twitter.com/maxwhd/status/1581926362033840128

..so my little story on FND, a friend from med school phoned me up one day in clinic said they had a patient with ME-type symptoms, gave me a background general overview no personal details, asked for some research on this - I said most likely pt will end up FND dx - given sympt

The picture comes together, HPA axis issues, pre-load failure, POTs for some, raised immune markers, SIBO-gut dysbiosis f-s, reactive HHV/Epstein Bar virus, reduced cortisol, inflammatory markers up, cell death proteins rasied, the picture of ME/CFS and LongCovid. ...much of what we now say we know about ME/CFS via LongCovid research, we actually already knew, many studies over 50 years have shown the same - what happened was 3 UK psychiatrists proposed an 'alternative model' of no disease, no biomarkers, nothing organic. They were wrong!

"..whats keeping them sick may not be a virus in the first place" - "the virus may have started something off....all sorts of other factors may be responsible for why they are ill many years later". I note that the basis of such a statement is simply Wessely's notion of "other"

https://twitter.com/ABrokenBattery/status/1537827731458727936

The virus may have started something off? - what exactly? the key question Wessely never answered. Deale and Wessely ran a survey of ME patients in his own clinic & most recounted an infection and were dissatisfied with a psychiatric diagnosis. sciencedirect.com/science/articl…

The Science Media Centre produced this Factsheet on 'the Controversy of ME/CFS' - claiming CBT-GET trials are of high quality in high impact journals, whereas post-hoc analysis of flaws and problems with the PACE trial are published in low impact journals sciencemediacentre.org/wp-content/upl… this would include some of my analysis papers on the PACE trial's methods and data - as well as work by others. The SMC view the journals as low impact without any consideration of the accuracy and import of the analysis in Health Psych or Fatigue @david_f_marks @davidtuller1

I have not yet read Fion Fox's book 'Beyond the Hype..." and its chapter comparing people with question the science of CBT-GET in CFS/CFS to Nazi's so I hold judgement - but I DO often ask myself this, what is the Science Media Centre? Who pays for it, who does it represent? As you can read in Fiona's own words, Science Medica Centre is a PR company, a private company, set up to present a spin on science stories - who gets to write the script at Science Media Centre? "Science doesnt have a PR company representing it?" - so who's spinning what and why

well done finding this historical evidence: as it happens I just used Dr Thomas in a paper I'm writing, he & another prominent psychiatrist dismissed the role of infections in ME causation in 1993 talk to UK Government officals. Here we hear his voice and his harmful ideas re ME

https://twitter.com/RFH1955/status/1328715962078666753

here is one line in a talk Dr Thomas gave that I quote in my paper: there are other misleading statements, this is just one and accounts for why you, ME patients, have suffered for years after 1993 when Thomas said this:

PACE lead author wants to teach the CBT model of CFS to LongCovid practitioners - based on nothing more than "the idea....psychological processes contribute to ongoing symptoms" this was the same idea for ME/CFS - which is now rejected as unscientific babcp.com/Events/Event-D… @gezmedinger @doctorasadkhan our #LongCovid and #ME/CFS worlds are very much colliding now, with PACE authors taking on the training of LongCovid rehab workers using the same approach CBT-GET. Perhaps a large multi-million pound RCT trial called "GET-FIT" will follow soon.

The latest from the PACE lead author, continuing to promote GET for ME/CFS, shows us work is still needed to ensure the NICE guidelines are properly implemented and we need to educate health care professionals about ME and the role of pacing. Much more work to be done here still.

https://twitter.com/davidtuller1/status/1511732503089868808

without rehasing the many problems we identified in the PACE trial covered in journals, I take note that there was very little "specialist" medical care as I know it in the trial, that named changed from standard medical care to specialist care to make it seem as if there was

Imagine being a junior researcher and you write a paper commenting on some obvious problems you observe in a CBT RCT that cost almost £5million & this many authors write a conjoined response saying you are not correct? - time to hide? no.... coyneoftherealm.com/2017/07/31/wha… One of my points back then was the PACE authors had run multiple smaller RCTs giving the same treatment since the early 1990s, Wessely, Sharpe, Chalder, White 20 years. So why mid PACE trial did they decide to "abandon" their published trial protocol & change their analysis plan

More from recovered #LongCovid sufferer Prof Garner, this time on Sky News telling LongCovid patients to "take some agency - work on yourself...dampen down the symptoms" wonder what @Dr2NisreenAlwan @bcdelaney1 might think re self-control of #LongCovid? -my stance on this is Prof Garner is right that patients should, to the best of their ability, help themsleves, but where are the boundaries of that approach? <medicine exists so people dont have to go it alone. To what extent can any LongCovid patient self-control their illness?

I think tweet is a good example of the typical type of case FND drs present in lectures, eg motor functional loss, gets physio & CBT & is back to normal (we salute this clinical work & patient). My concern is the promotion of the idea that all functional disorders are in similar.

https://twitter.com/ShafiqRashid11/status/1490978089173946376

Many chronic Lyme patients have tremor and muscle weakness, some ME patients have fasciculations, I have read of viral infections causing aseptic meningitis, indeed LongCovid could have similar neuro-inflammation. the question then is what can fall under the FND diagnosis now.

A patient who runs an FND twitter handle had a bit of a go at me today for even suggesting a patient with medically unexplained symptons like weakness might get an FND diagnosis, even though I know they can. I then said FND has/had been linked to conversion disorder - this is a link to a patient information website on FND clearly showing conversion disorder is one route to an FND diagnosis and has been part of the historical diagnostic development of FND and neuro MUS symptom or Bodily Distress Disorder patients are said to be common 10%

In 1988, UK psychiatrists wronly defined ME/CFS as a depressive-type disorder with somatisation, (overly focusing on bodily symptoms). Today 2021, the same flawed hypothesis is being offered to explain #LongCovid by the same people seeking funding. bmj.com/content/375/bm… ..a little reminder about what this and two other psychiatrists said about ME/CFS in their 1988 article. Regarding the role of viruses - they said evidence of viral infection is 'those interesting remain unconvincing'. Apply Sars-Covid-19 to LongCovid.

I've just watched the below talk by Prof Clarke and his colleagues at IAPT and I have a concern with the research he cites as a good example of IAPTs ability to treat Long-Term Health Conditions LTCs. I shall take you through some observations - may be something @CBTWatch look at

https://twitter.com/brazendale5/status/1464288644018192386

1st the cited study being used in the video for the economic benefits of IAPT treatment of LTCs comes from an IAPT commissioned study of their own early introduction of CBT providers eg Thames Valley. Prof Clarke is a co-author of the paper. journals.sagepub.com/doi/abs/10.117…

Interesting finding from my reading of a 1993 CIBA conference on ME/CFS including a range of researchers in early 90s. The role of viruses was largely dismissed but 1 virologist raised concerns about the role of viruses that can clearly cause fatigue and immune changes. A black box in ME/CFS from 1990s has been virologists uncertain "how" viruses cause fatigue in eg mono-EBV natural history studies show 10% of EBV sufferers may experience prolonged fatigue. Today we could think LongCovid. Psychiatrists theorised 'reasons' for fatigue continuing.

Records released by @NICEComms show the Royal College of Physicians @RCPhysicians asked NICE to remove an expert witness testimony on the grounds they werent an expert in "guideline dev or pragmatic trials". The expert in immunology has a long-term interest in ME/CFS science! Instead the @RCPhysicians asked NICE to accept the views of their experts and even called on the NICE director to overrule the guideline committee and dismiss other expert witnesses - because they were critical of CBT-GET trial methods!