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Horrifying article in Sunday Times

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Sasha

Here are Sonia's Tweets re a questionnaire:
https://twitter.com/SoniaPoulton/status/330980468960923648
https://twitter.com/SoniaPoulton/status/330992136713539584
https://twitter.com/SoniaPoulton/status/330983474070708224

She is proposing a "Patient Perspective" questionnaire about the "lived experiences" of ME patients and loved ones. I think it would be as a media project.
When she talks about 'loving the questionnaire responses', she's talking about the responses to her proposal, not the responses to the questionnaire, as she hasn't created it yet.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I bet that those dangerous militants are co-ordinating, and keeping lists of those they do not like - it's a fearsome conspiracy of sick and disabled people, targeting some of the most powerless people in society (Sir Wessely, White OBE, Sir Aylward, etc). Luckily, a brave crusading journalist like Hanlon is willing to fight in their corner, and provide a voice for those who are normally just cast aside. This would make a great movie.

:lol:
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sasha

Here are Sonia's Tweets re a questionnaire:
https://twitter.com/SoniaPoulton/status/330980468960923648
https://twitter.com/SoniaPoulton/status/330992136713539584
https://twitter.com/SoniaPoulton/status/330983474070708224

She is proposing a "Patient Perspective" questionnaire about the "lived experiences" of ME patients and loved ones. I think it would be as a media project.
When she talks about 'loving the questionnaire responses', she's talking about the responses to her proposal, not the responses to the questionnaire, as she hasn't created it yet.

Thanks! I was wondering if I was missing a link.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I've just noticed that only part of the article has been posted on this thread. There is more after the section that's been posted on this thread. I don't have a link to the full version.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I've spotted a rather significant contradiction here:
The strangest thing, he says, is the fact that when it comes to his ME patients, he gets no complaints at all.
But later, Wessely says:
"If you do not get better you feel resentment at people who do, and resentment at the treatments that helped them."
"A lot of patients who go to our clinic find the patient groups threatening."

So, first he says that there are no complaints from his own patients, at his clinics. And then he indicates that people have real issues at his clinics when subjected to his (inappropriate) therapies. So much so that they feel threatened and resentment.

_____________________________________________________________

It seems that I misunderstood this bit of the article.
Thanks to Tania for spotting my error:
Bob.. I think when he said that part about his patients finding patient groups threatening. I think he was rather refering to say patient groups like PR or other patient groups about the place, I dont think he was refering to any patient groups he runs.

http://forums.phoenixrising.me/inde...icle-in-sunday-times.23050/page-9#post-354653
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
And some creative license re William Reeves:
William Reeves, an American virologist and co-discoverer of the link between human papilloma virus and cervical cancer, gave up his CFS-related work at the Centers for Disease Control and Prevention after a torrent of vitriol was unleashed upon him for daring to suggest that the condition was "stress-related".
The New York Times has a slightly different angle on what happened:
A growing chorus of bloggers and advocacy groups denounced Dr. Reeves, and in 2009 an advisory committee to the Department of Health and Human Services recommended “progressive leadership” for the chronic fatigue program. In 2010, without public explanation, the disease centers assigned Dr. Reeves to a new post as senior adviser for mental health surveillance and put Dr. Unger in charge of chronic fatigue.

http://www.nytimes.com/2012/08/09/health/dr-william-c-reeves-who-sought-cause-of-fatigue-syndrome-dies-at-69.html
 
Messages
13,774
I've spotted a rather significant contradiction here:

But later, Wessely says:


So, first he says that there are no complaints from his own patients, at his clinics. And then he indicates that people have real issues at his clinics when subjected to his (inappropriate) therapies.

I expect that was just poor writing by Hanlon, and that the second quote was Wessely wanting to give an explanation as to why he is hated by loons on the internet that didn't make it sound as if he had done anything wrong.

I'm not sure if it's worth going through and pulling out all the misleading parts of the article Bob - you'll be here all day!
 
Messages
10,157
I've spotted a rather significant contradiction here:

But later, Wessely says:


So, first he says that there are no complaints from his own patients, at his clinics. And then he indicates that people have real issues at his clinics when subjected to his (inappropriate) therapies. So much so that they feel threatened and resentment.

I thought Wessely didn't treat ME patients anymore so why is he even making comments about this?
 
Messages
13,774
I thought Wessely didn't treat ME patients anymore

I don't think this is right. His retirement from the field seems rather partial - still doing talks on CFS, publishes papers on it, etc. I'd be surprised if he had no influence behind the scenes... I think that he thought his name was more of a problem than his claims about how patients should be treated that were the problem, so he avoided being associated with certain research.
 
Messages
10,157
I don't think this is right. His retirement from the field seems rather partial - still doing talks on CFS, publishes papers on it, etc. I'd be surprised if he had no influence behind the scenes... I think that he thought his name was more of a problem than his claims about how patients should be treated that were the problem, so he avoided being associated with certain research.

You are right Esther12, according to his own website:

I started my career studying unexplained symptoms and syndromes, and continue to see sufferers from chronic fatigue syndrome in our clinical service. However, these days, my main research interests these days lie in military health and how people and populations react to adversity I am also very involved in undergraduate and postgraduate medical education.

I noted in the article that Wessely commented that he receives no complaints from his patients but I also have never come across any of his patients on the internet saying that Wessely has actually done anything beneficial for them. He's always saying how CBT works for his patients but I don't see any anecdotal reports from patients that this is true.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Biophile
I fart, loudly, in their direction, too!! ;) View attachment 4982

Hush - keep the noise down, please, Silverblade. Some of us are trying to enjoy our lives of luxurious leisure on welfare benefits.

I've just noticed another illustration of Hanlon's poor understanding:

"My first, rather uncharitable, thought was that for a group of people whose primary symptom is a lack of energy, the activists in the ME community seem to have the persistence and determination of Hercules himself."

How, I wonder, does he perceive the extraordinary persistence and determination of other people with conditions that sap their strength and energy? Why does he equate physical energy with strength of mind? It suggests to me that he has had very little contact with disabled people.

Maybe to help non-sufferers understand the anger that we feel it is necessary to use an analogy with a condition with which they are more familiar. How about this fictional situation:

The true nature of diabetes is not yet understood. A powerful group of academics conclude that the problem is low blood sugar arising from loss in urine. They consequently prescribe a high-sugar diet for patients and use their influence to get this made official policy.

Meanwhile, proper scientists are finding that the problem is in fact due to the body being unable to deal with sugar, and conclude that patients actually need a low-sugar diet. Their findings are published but not acted upon. Patients start finding the published papers and realise that the advice they are being given is wrong and dangerous. The complications that many are suffering - due to the incorrect advice - make many unable to work any more, but they cannot get benefits because they refuse to adhere to the official treatments.

Does that help, Mr Hanlon?
 
Messages
13,774
I noted in the article that Wessely commented that he receives no complaints from his patients but I also have never come across any of his patients on the internet saying that Wessely has actually done anything beneficial for them. He's always saying how CBT works for his patients but I don't see any anecdotal reports from patients that this is true.

I found one person who said they had found Wessely helpful. I'm sure that there are others too - there are anecdotes for anything with regards to health.

No CFS patient who understands how the NHS works would bother making a complaint for anything but the most extraordinary abuses. There's no way I would bother making a complaint about psychosocial CFS quackery - that doesn't mean that I don't think it has been harmful. Far more obvious and serious problems get routinely ignored, and combined with the prejudices which surround CFS and the danger of being known as a CFS patient with a history of making official complaints about medical staff, it would take a brave soul to start making complaints about how one has been treated.

Anyway, I think that the most serious problems with the biopsychosocial approach to CFS only tend to become apparent to patients once they start reading research papers, and realise that their treatment and the false reassurance being given to them about recovery, the role of de-conditioning, and the efficacy of treatments were not a result of honest incompetence, but a deliberate attempt to manage cognitions that is routinely applied without informed consent.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I noted in the article that Wessely commented that he receives no complaints from his patients but I also have never come across any of his patients on the internet saying that Wessely has actually done anything beneficial for them. He's always saying how CBT works for his patients but I don't see any anecdotal reports from patients that this is true.

I have come across a number of people saying that CBT has been helpful for them, including one or two who have attended Barts (or where-ever it is that the Wessely school practise), and found their approach to treatment to be credible, and useful for them personally.
 

user9876

Senior Member
Messages
4,556
Hush - keep the noise down, please, Silverblade. Some of us are trying to enjoy our lives of luxurious leisure on welfare benefits.

I've just noticed another illustration of Hanlon's poor understanding:

"My first, rather uncharitable, thought was that for a group of people whose primary symptom is a lack of energy, the activists in the ME community seem to have the persistence and determination of Hercules himself."

How, I wonder, does he perceive the extraordinary persistence and determination of other people with conditions that sap their strength and energy? Why does he equate physical energy with strength of mind? It suggests to me that he has had very little contact with disabled people.

Maybe to help non-sufferers understand the anger that we feel it is necessary to use an analogy with a condition with which they are more familiar. How about this fictional situation:

The true nature of diabetes is not yet understood. A powerful group of academics conclude that the problem is low blood sugar arising from loss in urine. They consequently prescribe a high-sugar diet for patients and use their influence to get this made official policy.

Meanwhile, proper scientists are finding that the problem is in fact due to the body being unable to deal with sugar, and conclude that patients actually need a low-sugar diet. Their findings are published but not acted upon. Patients start finding the published papers and realise that the advice they are being given is wrong and dangerous. The complications that many are suffering - due to the incorrect advice - make many unable to work any more, but they cannot get benefits because they refuse to adhere to the official treatments.

Does that help, Mr Hanlon?

You are assuming that he wants to or is even prepared to try and understand. What I find shocking is that for a science corrosponent he doesn't even attempt to tackle or understand the science. When you look at the questions he was asking people none were asking about the science or why people have methodological issues with the PACE trial but they were looking at the politics around it.

He said to people that he already had a view and from what we have seen of his corrospondance with people he was not asking any questions to challenge that view.