Jonathan Edwards
Senior Member (Voting Rights)
Even if the committee agree that Lady Tweedsmuir's comments about the quality of your marmalade were offensive, Caroline, they are unlikely to make that public, it seems.
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Health Sense article: Why deny patients with chronic fatigue syndrome treatments that can help?, 2022, by Peter White
- Thread starter Adam pwme
- Start date
Charles B.
Senior Member (Voting Rights)
The public criticism without adequate follow-up is like the pronouncement of a feudal lord. When you demedicalize a disease and portray its sufferers as malcontents, a response isn’t warranted. I feel the Long Covid community is finally seeing the writing on the fall as White, Chalder, etc intimate a desire to test their theories on a new crop.
Andy
Retired committee member
Trial By Error: PACE Team Stages a Comeback Tour
"Professors Peter White, Trudie Chalder and Michael Sharpe seem to have embarked on what could be called the PACE Rehabilitation Tour.
....
Last week, HealthSense, a UK watchdog group formerly called HealthWatch, posted Professor White’s umpteenth defense of the £5.000,000 PACE trial, which he co-led with Professors Sharpe and Chalder. The trial purported to show that GET and CBT were effective treatments. Professor White’s article was a feeble response to a cogent HealthSense commentary by Caroline Struthers, a Senior EQUATOR Research Fellow at Oxford University (also a friend and colleague), called “It is not only drugs and devices that can harm.”"
https://www.virology.ws/2022/04/11/trial-by-error-pace-team-stages-a-comeback-tour/
"Professors Peter White, Trudie Chalder and Michael Sharpe seem to have embarked on what could be called the PACE Rehabilitation Tour.
....
Last week, HealthSense, a UK watchdog group formerly called HealthWatch, posted Professor White’s umpteenth defense of the £5.000,000 PACE trial, which he co-led with Professors Sharpe and Chalder. The trial purported to show that GET and CBT were effective treatments. Professor White’s article was a feeble response to a cogent HealthSense commentary by Caroline Struthers, a Senior EQUATOR Research Fellow at Oxford University (also a friend and colleague), called “It is not only drugs and devices that can harm.”"
https://www.virology.ws/2022/04/11/trial-by-error-pace-team-stages-a-comeback-tour/
An excellent article, @dave30th. Thank you. I think it's a very good idea to bring to the fore again the breach of the Declaration of Helsinki by the PACE principal investigators who did not inform patients of their conflict of interest in working for the insurance industry recommending these same treatments. There are also some good responses under the article.
I hope there's a way of spreading the word about this article and David's work and fundraiser among the Long Covid community too.
I hope there's a way of spreading the word about this article and David's work and fundraiser among the Long Covid community too.
I've never really understood the failure to take this seriously. And the Health Research Authority really whitewashed this and did not call them out on it. No one forced them to promise to adhere to Helsinki but they did. If they hadn't, I don't know that the prevailing standards in 2005 would have mandated these disclosures.
Mithriel
Senior Member (Voting Rights)
That is outrageous. It calls your professional competence into question and needs to be addressed. I would think you had a legal case against them.
What sort of person says someone has made basic errors and then refuses to say what they are and what sort of person would condone that?
Despicable people, that's who.
No one who deals with ME shows any ethics whatsoever unless they are some of the few defending patients. If the patients were truly wrong or misguided then the case against them could be stated in a clear manner and no twisting and breaking of the moral code would be needed.
rvallee
Senior Member (Voting Rights)
Sniping from the safety of ivory towers works fine when the crowd is thin and divided. Works very poorly when it masses up all the way to their floor. A low wail for help doesn't carry far, but make it a crowd and it's impossible not to hear.
For sure the trope of a "small vocal minority" will carry on for a while but time will only make it more ghoulish, reveal a deep rot in the system of healthcare for allowing such needless cruelty. Somehow, the reaction is about as haughty as the most privileged aristocrats out there, they really have no clue how deeply the peasants are furious at them.
It's M.E. Linda
Senior Member (Voting Rights)
Suffolkres
Senior Member (Voting Rights)
HealthSense is the new name for HealthWatch Find out more.
"The objects of the charity are the advancement for the public benefit of medical knowledge, training and care in all its branches and in particular the development of good practices in the assessment and testing of treatments and the conduct of clinical trials generally and the promotion of high standards of health care by practitioners."
Oh my, what's not to like.....?
'Nick Ross was among a small group of professionals who met to share Professor Baum’s concern at patients risking their health, not to mention wasting their money, on unproven treatments. HealthWatch was born, ........
Today
While initially concerned with unproven treatments, over the years we have widened our area of concern and now promote evidence and integrity in all forms of medicine and healthcare.
Being completely independent, HealthSense is able to oppose poor evidence whether it is found in alternative remedies, clinical research, pharmaceutical products, government-run programmes, or the media.
Nick Ross continues as HealthSense’s president. Its patrons are Dr Margaret McCartney, comedian Robin Ince, Professor Steve Jones FRS, Sir Michael Rawlins, and ....Lord Dick Taverne. (!!!!!!)
HealthWatch was registered in the UK as a charity in July 1991, and renamed as HealthSense in January 2022 (Registered Charity no. 1003392).
All our members and committee are volunteers.'
"The objects of the charity are the advancement for the public benefit of medical knowledge, training and care in all its branches and in particular the development of good practices in the assessment and testing of treatments and the conduct of clinical trials generally and the promotion of high standards of health care by practitioners."
Oh my, what's not to like.....?
'Nick Ross was among a small group of professionals who met to share Professor Baum’s concern at patients risking their health, not to mention wasting their money, on unproven treatments. HealthWatch was born, ........
Today
While initially concerned with unproven treatments, over the years we have widened our area of concern and now promote evidence and integrity in all forms of medicine and healthcare.
Being completely independent, HealthSense is able to oppose poor evidence whether it is found in alternative remedies, clinical research, pharmaceutical products, government-run programmes, or the media.
Nick Ross continues as HealthSense’s president. Its patrons are Dr Margaret McCartney, comedian Robin Ince, Professor Steve Jones FRS, Sir Michael Rawlins, and ....Lord Dick Taverne. (!!!!!!)
HealthWatch was registered in the UK as a charity in July 1991, and renamed as HealthSense in January 2022 (Registered Charity no. 1003392).
All our members and committee are volunteers.'
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Why deny patients with chronic fatigue syndrome treatments that can help?
Now that is some dishonest framing.
Now that is some dishonest framing.
Yep. It is dirty gutless behaviour.That is outrageous. It calls your professional competence into question and needs to be addressed. I would think you had a legal case against them.
What sort of person says someone has made basic errors and then refuses to say what they are and what sort of person would condone that?
Despicable people, that's who.
Caroline Struthers
Senior Member (Voting Rights)
I will write a response to White's post as soon as I can. It will include the claim by Carson that I made basic errors in my original commentary, and the refusal by Carson to say what they are. Of course, HealthSense may refuse to publish it...
It's M.E. Linda
Senior Member (Voting Rights)
……if they refuse to publish it…..
In which case, if you would like @Caroline Struthers, I am sure that some influential social media people would be more than happy to post your letter publically and ask (tag) “HealthSense” to explain
a) why you have not been given the courtesy of a response requesting details of such alleged “basic errors”? and,
b) indeed, why your right to reply has not been published?
ETA - worded better
Caroline Struthers
Senior Member (Voting Rights)
Am writing a response now. The HealthSense newsletter is only published 3/4 times a year, so I will put my response on my blog, Tweet it, and tag HealthSense, Carson etc. Such fun!
Yes I'm told* that putting it on social media is a good idea - may force a response
*Former colleague, who worked in the Minister's private office - my approach was/(largely) remains to write emails etc. However, their advice was to put it on social media - more public and thereby more likely to require a response/action.
It's M.E. Linda
Senior Member (Voting Rights)
Caroline Struthers
Senior Member (Voting Rights)
Of course. Procrastinating madly, but will hopefully get it done in time to share on Monday
Barry
Senior Member (Voting Rights)
A similar argument might be: Why deny people needing an adrenaline boost the right to engage in Russian roulette?Peter White said:
It's not just about people a treatment can help, but also very much about people the treatment can harm, and whether there is any way to know beforehand which group any one person will end up in; at the moment for ME/CFS no one knows that, and for some practitioners no one cares.
Barry
Senior Member (Voting Rights)
The deconditioning notion is total, total, BS. They have got their logic completely @rse backwards with this, and seem totally incapable of understanding that some more severely affected patients will be suffering from ME/CFS plus deconditioning, the latter being a consequence of the former. The fact they can only see the deconditioning, and bias everything they do to filter out everything else ... not only should they not be scientists, they should not be engaging in anything technical, or requiring logical thinking, at all!
So many 'only illness that their one treament can't benefit' you'd think people would cotton on to how many they've said this about
A self-imposed Truman Show