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How the ME zealots tried to terrorise me Dr Max Pemberton

Cheshire

Senior Member
Messages
1,129
The saga continues...

This week, a major Oxford University study suggested a combination of two types of treatment, graded exercise therapy (GET) and cognitive behavioural therapy (CBT), can offer sufferers significant help, making them less tired and more able to complete everyday tasks.

But this apparent good news was met with hostility from a minority of sufferers, who are furious at the suggestion that the answer might involve psychotherapy.

http://www.dailymail.co.uk/debate/a...g-farce-NHS-doctors-barely-speak-English.html
 

Sidereal

Senior Member
Messages
4,856
ME activists will claim that the condition’s caused by anything rather than the mind — viruses, the immune system, toxic chemicals . They’ll seek a cure from any other doctor, but not a psychiatrist.

And it’s just so misguided.

Imagine you’ve gone to the GP with a rash, asking to be referred to a dermatologist. But the GP explains that actually you have psoriatic arthritis — a joint problem that causes rashes — so the best person to see isn’t a skin doctor but a joint doctor.

You wouldn’t threaten to letter-bomb the GP, would you? You’d say thank you very much; what a relief I’m going to see the right doctor.

And that’s all that’s being suggested with ME. So why the hatred?

Analogy of the year award goes to... :rolleyes:
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Thanks for posting this GOLDEN opportunity to get news of the #MEAction petition into a major UK newspaper! :woot:

I just posted this (held in moderation) and I'd be grateful if people voted it up when it appears, because top-voted posts are seen first when people visit the page (I think - or at least can be when they hit a button):

Sasha said:
Abuse is to be abhorred in whatever form it comes. I am sorry to hear that you have received abuse in relation to the PACE trial (the "Oxford University" study you refer to). Such abuse is wrong and helps no one.

However, the PACE trial is deeply flawed. Claims that patients recovered after their treatment were based on ludicrously low thresholds - for example, the recovery threshold for physical function was similar to that of the average for patients with Class II congestive heart failure.

The petition calling for the retraction of these claims in The Lancet and Psychological Medicine is already nearly 5,000-strong in just over two days.

I'm sure you don't approve of bad science, Dr Pemberton, and I urge you and your readers to sign the petition:

http://my.meaction.net/petitions/pace-trial-needs-review-now

The petition's background pages clearly explain the issues and perhaps your next column will have a different "frightening farce" to write about.

Have a lovely weekend.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I almost posted this morning that we should expect this to appear. The bad press that the PACE trial got this week was putting pressure on them, and they dont want to face questions that they cannot defend. The answer is obvious, divert attention to something else, and what better than to attack patients themselves and discredit them?

It's this sort of thing that really confirms for me that these people are not just sincere about their work and simply horribly misguided about it, rather they know their work is indefensible, and they really dont care about patients one bit. It is all about maintaining their income and status. How distasteful.

As always though, it is a sign of their desperation, and a signal for us NOT to get caught up in the narrative of their choising, but stick instead to the narrative about the poor methodology of PACE. That is where they dont want to be.
 

Chrisb

Senior Member
Messages
1,051
Good to see the scientific language used: "Suggested", "can", "sufferers". Well up to the normal standards of the Mail.

Hard to understand how someone with a supposed scientific training could write in such terms. Or is it just a case of instructions to Phil Space for 550 words?
 

CantThink

Senior Member
Messages
800
Location
England, UK
Oh it's a woe is us story! Us being: him, Sir Simon, and the other doctors/researchers who subscribe to this belief. They just want to try to help us, and we won't accept that we are psychologically ill... Apparently people with chronic Lyme are the same!

Sadly, I think they cause mental illness or symptoms in some sufferers because of the way we are marginalised, treated or not treated etc. For example, years of not having medical support, and being too scared to admit what is wrong with you because of what might happen to you etc. IMO It messes with your mind and can bring about or exacerbate the flight or fight or PTSD type symptoms.

Side note, I don't agree with the harassment/threatening nature of what some people purportedly engage in due to their disagreement/frustration etc: (my bolding)

[...] But this apparent good news was met with hostility from a minority of sufferers, who are furious at the suggestion that the answer might involve psychotherapy.

In many ways, it’s similar to how sufferers of chronic Lyme disease, which I wrote about recently, feel affronted at the suggestion that their illness is psychological in origin. One critic of the Oxford study wrote that it was suggesting sufferers were ‘making it up’, and that their experiences were being ‘belittled’ and ‘dismissed’.

But they aren’t being belittled. In fact, I’ve never met a doctor who doesn’t accept that the symptoms of ME/CFS are incredibly debilitating. It’s simply that the current medical explanation of the causes isn’t to the liking of a minority of sufferers.

To me, this says much about how society views mental illness: that it’s not as real as physical illness, not worthy of the same compassion or concern, and that people who have it just need to pull their socks up.

In fact, the majority of those with ME are very open to psychological solutions. That’s why studies like this can get large numbers of participants.

But a very vocal minority respond with extraordinary aggression, as I’ve discovered when I’ve written about this before. Not only have I been targeted and threatened, my partner, friends, agent and publisher were harassed, too. Activists even found the name of the person who ran my website and inundated her with bullying messages.

Pictures of my flat were circulated online. The police had to come to assess how secure it was and put me on a ‘rapid response’ list.


The energy these ME activists have is extraordinary. But what’s worst of all is that they pursue people who are desperate to support them. One leading researcher, Professor Simon Wessely, has now given up because of the abuse he received.

Yet Sir Simon has told me that the very reason he began his work was because, as a young doctor, he saw that sufferers were being turned away by neurologists who could find no physical basis for their problems.

He felt they were being let down, wanted to help and developed the treatment programme now endorsed by the Oxford study.

ME activists will claim that the condition’s caused by anything rather than the mind — viruses, the immune system, toxic chemicals . They’ll seek a cure from any other doctor, but not a psychiatrist.

And it’s just so misguided. [...]
 

CantThink

Senior Member
Messages
800
Location
England, UK
Just thinking - they are allowed to engage in all this moaning and whinging about how they are targeted.. What about the people who are forced into psychiatric care here and abroad - their stories don't make column inches. :mad: Outside the M.E. community very few people know about this... It's disgusting.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
So many ways that ridiculous article can be pulled apart I wouldn't know where to start. My GP happens to be a specialist in psychosomatic conditions, and as part of the examination of my symptoms I agreed to go and see a psychiatrist. Both she and my GP have subsequently excluded psychological causes, in writing, for my symptoms. Throughout I was cooperative and not threatening or abusive to anyone.

He is painting an imaginary picture of some ME patients, and offering it up to the great british public via mass-media with no evidence (the journalists don't seem to require any). That's all they seem to have left, like a child throwing a last tantrum.
 

Effi

Senior Member
Messages
1,496
Location
Europe
So many ways that ridiculous article can be pulled apart I wouldn't know where to start. My GP happens to be a specialist in psychosomatic conditions, and as part of the examination of my symptoms I agreed to go and see a psychiatrist. Both she and my GP have subsequently excluded psychological causes, in writing, for my symptoms. Throughout I was cooperative and not threatening or abusive to anyone.

He is painting an imaginary picture of some ME patients
I was just thinking exactly the same thing. Many (if not most) of us have gone to a psychiatrist, because we want help and we don't care where we get it - 'who knows? maybe he can help me?'. Psychological causes are then excluded by said psychiatrist, so you're back at square one: no help by no one. The only reason why we keep saying the psychological road leads us nowhere is because we have tried it and it has led us... nowhere. And no, it has not been proven that this is the only solution for us, because PACE is flawed from beginning to end. There is no proof, not in theory, not in reality. Let it go already.
 

Chrisb

Senior Member
Messages
1,051
There does appear to be surprising conformity in the response to any valid criticism. Blame the crazy patients, mention the inconvenience to friends and family, note the involvement of the police.

How and why do we think all this is co-ordinated? Why should criticism entirely within the scientific tradition meet with such vituperation rather than an honest attempt to address the criticism. The art of spin should be confined to politics. Perhaps it is.
 

Riley

Senior Member
Messages
178
"But what’s worst of all is that they pursue people who are desperate to support them. One leading researcher, Professor Simon Wessely, has now given up because of the abuse he received."

:lol:

Guys, Simon Wessely is DESPERATE to support us.

If only it were true that he had given up.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
How long does it typically take to get a comment published? I'm waiting to green arrow click!

Dunno... still waiting! Thanks for your support. Maybe when one of us spots it we can provide a link here to the post so that it's easy for people to find and vote up. I want that petition out there!

And if anyone else is going to comment, please do mention the petition - this is a fantastic, fantastic opportunity.