Special Report - Online activists are silencing us, scientists say Reuters March 2019

TiredSam said:
What a bland article written in a well-meaning but clueless tone. Doesn't distinguish between chronic fatigue / chronic fatigue syndrome. A few excerpts to give the flavour:








Ok, I'll try to have five minutes' rest every hour, and avoid the temptation of having a lie in if I feel tired. Thanks.

I hope an article worth reading doesn't turn up in the Times this week because I've used up my two free articles now. Somehow I don't think it's going to be a problem.
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If this is a representative of GPs supposedly considering himself informed enough to be writing on the subject this is shocking lack of knowledge. What’s chronic fatigue doing all over the place? Someone like him has absolutely no idea of how to diagnose ME or the symptoms or debilitation involved. It just shows the harm of people like Michael Sharpe because this is his legacy: Drs unaware of its true presentations, blasé about diagnosis because they don’t understand the huge harms of poor management, thinking ME is CF, far too open to the idea that psych factors are really important here, downplaying severity etc. If you think psychologists are the people needed to tackle our challenge then WTH. .,

Edit, As I’ve said before i think that we missed A chance in embracing SEID and IOM definition more in UK because it’s all of the above we need to untangle and simply lobbying and educating in the ways we have available isn’t working. We either needed a change in name and definition to break free from the CF shit or have to wait for NICE &/or research.
 
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Skycloud said:
I agree and think a piece produced 'soon' will likely rely heavily on Kelland's reuter's piece.
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Jonathan Edwards said:
Yet Ryan's tweet sounded sympathetic to PWME.
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The problem is that journalists don't understand the issues as well as they think they do, so they can set out to write what they think is a balanced, supportive piece but still get it horribly wrong and end up repeating the same old misconceptions and misrepresentations. The Isabel Hardman piece in The Spectator a few years back is a good example of this - she thought she'd written a sympathetic counterpoint to Liddle's rants, and was understandably taken aback when her endorsement of the effectiveness of CBT for ME provoked angry feedback.

Ryan did ask yesterday on Twitter for pwME to suggest articles that they thought gave a good overview and got lots of good suggestions (Tuller, Rehmeyer, Bastian, etc) so hopefully anything she writes will be better informed than the Guardian's previous efforts. Fingers crossed.
 
Stewart said:
Ryan did ask yesterday on Twitter for pwME to suggest articles that they thought gave a good overview and got lots of good suggestions (Tuller, Rehmeyer, Bastian, etc) so hopefully anything she writes will be better informed than the Guardian's previous efforts. Fingers crossed.
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That's encouraging but all she needs to do is send me a quick email. I can very likely nip round and tell her all she wants to know.
 
Roy S said:
This tweet is from the sister of the boss of the SMC. It looks like assistance in antagonizing/trolling to try to sustain the dying false narrative.

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Claire Fox is a regular on BBC R4's "The Moral Maze". I think that once there is good hard scientific evidence of what ME really is, the programme should maybe address the morality of people like her trying to bury the truth in this way.
Skycloud said:
So according to Mark Porter anyone writing on the subject needs a thick skin to cope with the feedback.
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How thick do these people think the skins of pwME have had to be all these decades?
 
I am sorry that my thoughts generally occur to me long after a conversation has moved on. We have now moved on from the mental or physiological aspects. However I think it worth reminding people of how the debate originally arose and why the debate is so, in the currently fashionable term, toxic.

Myalgic encephalomyelitis. A warning: discussion paper
Article (PDF Available) in Journal of the Royal Society of Medicine 82(4):215-7 · May 1989
www.researchgate.net/publication/20440254_Myalgic_encephalomyelitis_A_warning_discussion_paper

It should be remembered that, in the context of this paper, CFS is the Holmes et al condition. The paper suggests the combining of that form of CFS with known affective disorders. At one end of the spectrum would be cases of "ME", in the middle ME with additional affective disorders and, at the other end of the spectrum, affective disorders. This is the spectrum deliberately provided by the Oxford criteria.

The concerns have nothing to do with stigmatisation of "mental disorders". It is about recognising distinctions which were well known to those who established the Oxford criteria, and everything those critteria have led to.

Those who have not read it should do so and draw their own conclusions.
 
Barry said:
For me it is really not complicated. Applying clinical treatments to an illness, on the basis that it is a different illness (deconditioning perpetuated by unhelpful beliefs, in our case), is just plain wrong, full stop. Anything else is just a distraction from this.
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Chemotherapy for gout
Chelation treatment for Alzheimer's disease
Exercise or cognitive therapy for ME
Antivirals for liver disease
Chiropractic adjustments for emphysema
Exorcism for brain tumors

All equally wrong for the same reason: the wrong solution applied to the problem. The rationale for rejection is the same: they are invalid.

And roughly the same applies for the basic definition:
Parkinson's disease is not chronic shaking
ME is not chronic fatigue
Alzheimer's is not chronic forgetting
Pneumonia is not chronic coughing

The nature or profession of whoever says any of those things is equally irrelevant. You don't call a firefighter to fix your plumbing and it has nothing to do with an opinion about firefighters in general or some specific personal dislike of the firefighters themselves. No one is objecting to the necessity of firefighters by making the point that they are not particularly qualified for plumbing work.
 
rvallee said:
The nature or profession of whoever says any of those things is equally irrelevant.
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I do not think this is necessarily true. I think if a profession (or a distinct sub-faction within a profession) wields an inordinate amount of influence outside of its domain - for whatever the reason - and it has manipulated dogma to serve its own agenda, then profession can be frighteningly relevant. We see this all the time in politics where scientists or agencies that represent them have been suborned for the sake of corporate profits or expediency. Cigarette manufacturers come to mind. Coal vendors, too.
 
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SallyC said:
Exactly. He 'worries' about Sharpe's 'harassment' but actually never mentions the treatments Sharpe advocates as recommendations. He confusingly says that there is evidence for pacing which I'm sure Sharpe would dispute! It's a completely on the fence piece which comes across as written by someone who either doesn't know much about the condition (and therefore shouldn't be opining on it) or isn't willing to reveal their own allegiances.

There is no mention of testing for conditions like POTS/OI etc which a GP could actually try to treat and provide some relief for. He ultimately says that a diagnosis of ME (like you quote) is not helpful because no help can be offered which is utter nonsense. In what situation is telling someone what their illness is not helpful? People get given terminal diagnoses and I cannot imagine what that feels like but a doctor wouldn't stray away from it because there is nothing more they can do.

This is rambling and I'm not making my point very well but this is a complete non-article.
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Apparently following a comment I left there has been a correction from CFS aka ME to CFS or ME. Porter said the first version was chosen by the editorial team and he asked them to change.

I left this response:
That's still as confusing as saying Parkinson's disease OR chronic shaking syndrome. It's simply an invalid description, it mixes up superficially similar but fundamentally different realities.

Fatigue is one of the most common symptoms in medicine and chronic fatigue is very common in the general population. They are symptoms, not adequate diagnoses and particularly not analogous to ME.

I understand the nature of the confusion. It actually underlies most of the problem here. Sharpe's work created this artificial concept of chronic fatigue as being equivalent to ME. It is not. This blurring of distinct diagnoses IS the controversy.

Sharpe et al's obsessive focus on fatigue at the exclusion of everything else is fundamentally flawed and being able to influence people to rate themselves as slightly less fatigued on a questionnaire is simply not credible evidence. There is still not a single piece of objective evidence for this model despite 30 years of effort.

There is no piece of technology or scientific breakthrough that will bridge some imagined gap. Sharpe's work could have been done as is a century ago. There is nowhere else to go. PACE was supposed to be the definitive trial, the endpoint. Moving the goalposts following failure is not proper scientific methodology.

PACE had null results, as did FINE and every other large trial that tried this method. Pretending otherwise is unethical and a failure of duty of care. Research is accelerating, the field is growing, a handful fewer among hundreds more is a true tempest in a teapot.​
 
Arnie Pye said:
Could you make use of ThreadReaderApp?

https://techcrunch.com/2018/01/04/thread-reader-app-twitter/
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Thanks for the info! Although I ended up opting for Evernote's webclipping tool for simplicities sake (If it's on their cloud drive there will be some sort of record of when I took it and whether it's the original version). To be honest though so many people have screenshot and discussed the tweet it would be hard for him argue that he never tweeted it anyway.
 
rvallee said:
Apparently following a comment I left there has been a correction from CFS aka ME to CFS or ME. Porter said the first version was chosen by the editorial team and he asked them to change.

I left this response:
That's still as confusing as saying Parkinson's disease OR chronic shaking syndrome. It's simply an invalid description, it mixes up superficially similar but fundamentally different realities.

Fatigue is one of the most common symptoms in medicine and chronic fatigue is very common in the general population. They are symptoms, not adequate diagnoses and particularly not analogous to ME.

I understand the nature of the confusion. It actually underlies most of the problem here. Sharpe's work created this artificial concept of chronic fatigue as being equivalent to ME. It is not. This blurring of distinct diagnoses IS the controversy.

Sharpe et al's obsessive focus on fatigue at the exclusion of everything else is fundamentally flawed and being able to influence people to rate themselves as slightly less fatigued on a questionnaire is simply not credible evidence. There is still not a single piece of objective evidence for this model despite 30 years of effort.

There is no piece of technology or scientific breakthrough that will bridge some imagined gap. Sharpe's work could have been done as is a century ago. There is nowhere else to go. PACE was supposed to be the definitive trial, the endpoint. Moving the goalposts following failure is not proper scientific methodology.

PACE had null results, as did FINE and every other large trial that tried this method. Pretending otherwise is unethical and a failure of duty of care. Research is accelerating, the field is growing, a handful fewer among hundreds more is a true tempest in a teapot.​
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Thanks for conveying that important information. I hope that he reads it
 
He can't just resist commenting can he.....



michael sharpe Retweeted
Simon Wessely‏ @WesselyS Mar 16


Replying to @inpsychfulminds @profmsharpe and

Some say it’s all about the science, citing PACE. But not true - it’s been going on for 2 decades before PACE which remains a good trial and which was opposed before it recruited a single patient. Its about the cap badge of the interventions and the researchers. Sad for everyone
 
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