Interesting letter and response in the UK's Telegraph re CBT for CFS

[Bob]

This is a very interesting letter and response in the UK's Daily Telegraph re CBT for CFS/ME.
(The Daily Telegraph is one of the UK's most popular national 'broadsheet' dailies.)

I think the letter is particularly well constructed and argued, with regards to prescribing CBT for CFS/ME.
And I was surprised by the response.


Dr Le Fanu's online health clinic, Friday 1st August 2014
http://www.telegraph.co.uk/health/1...ine-health-clinic-Friday-1st-August-2014.html


A reader writes:

Dear Dr Le Fanu

Would you be interested in this story?

Why is the PA taking sides? Why will it not stand up for patients? If the PA won't, then who will speak for ME patients?
John P

Then he continues with the details...

Patients Association snubs patients with ME.

Despite its claim to offer neutral advice and to be an advocacy group for patients, the Patients Association (PA) has taken sides in the debate surrounding Myalgic Encephalomyelitis/Myalgic Encephalopathy (ME) and has come out against the majority of patients with the illness.

The dispute centres on comedian and doctor Phil Hammond. Dr Hammond is a Vice President of the Patients Association. He also supports the use of the controversial Cognitive Behavioural Therapy (CBT) for ME.

The PA has rejected complaints by people from ME and continues to endorse Dr Hammond, and through him CBT for ME.

ME patients cannot understand why the PA has forsaken its neutrality to back one approach. Especially as this approach is rejected by the majority of patients with the devastating illness and respected organizations such as the ME Association.

They are at pains to point out that this is not an attempt to bully or silence Dr Hammond who is free to support any theory he likes and who in any case has the pulpit available to him of a column in 'The Times' (to which he is an occasional contributor). They stress this dispute is about the position of the PA and its central role of speaking up for patients.

Nor is this about CBT in itself. ME is devastating and, like anyone suffering a chronic illness, some patients may benefit from help to cope with being ill or to manage the effects of the symptoms.
What patients with ME cannot understand is why some people keep asserting that CBT treats the actual illness.

Anyone who claims CBT is an effective treatment for ME has to show three things: that patients with ME benefit from CBT; that this benefit is from treating the illness and not just the patient; and that everyone contained within the diagnostic criteria has the same illness.

For the sake of argument, if the first is allowed, that some patients benefit, the other two points have never been established, despite over 25 years of assertions, thousands of hours of 'treatment' and millions of pounds of research.

In steps the Patients Association and, to the disbelief of people with ME, it sides with the proponents of CBT, with Dr Hammond. The Patients Association turns its back on the patients.

The PA hasn't said why, but for the people with ME whom it has snubbed, the Association appears to prefer having a minor celebrity on board to fulfilling its self-proclaimed role as an advocate for patients.

Dear John P.

Thanks for being in touch. I share your scepticism about the claims of the benefit of CBT for those with ME and would agree that the Patients Association should more accurately reflect the controversy on this matter.

I am not aware of any of the facts surrounding the issues raised with respect to the Patients Association and Dr Hammond. I'm simply reposting the information that I found in the Telegraph.

 

[MeSci]

I had not been sure about Hammond's beliefs about ME, although I knew he (had?) worked in clinics that provided CBT.

It would be interesting if he could clarify his view once and for all.

If he really does support CBT (and GET), then I will have completely gone off him. I have found his comedy amusing, but will not bother watching or listening to him again if he takes this stance.

Someone in his position has the power to make a positive difference, and it's about time he did.

Thanks for the notification, @Bob.

 

[Bob]

Thanks for the notification, @Bob.

You're welcome. I've not actually ever heard of Dr Hammond, except in this article.

 

[MeSci]

You're welcome. I've not actually ever heard of Dr Hammond, except in this article.

It's ironic really, as he is very keen on patient empowerment and whistleblowing and openness about medical errors:

http://medicalharm.org/about-us/

 

[Wildcat]

.

Dr Philip Hammond:

"I trained as a GP and worked as one for 20 years before retraining as an associate specialist in the young people's specialist Chronic Fatigue/ME service at the Royal National Hospital for Rheumatic Diseases NHS Fountation trust in Bath (the Mineral Hopsital). We work as a team of doctors, psychologists, physiotherapists, occupational therapists, support staff and managers under the leadership of Dr Esther Crawley."......

https://www.iwantgreatcare.org/doctors/dr-philip-hammond

.

 

[Snowdrop]

Once again, personal ambition and financial gain trump reasonable and responsible action/care.
Or maybe he just goes with the flow and never gave it an itty bitty little thought.
When did integrity get it's butt kicked out the door with a don't ever return notice.
The man has made a nice living off of ME while we remain the living dead.
Shame.

Thanks for posting this @Bob. I am so past caring what his excuse might be. And I'm needing the opportunity to vent.
My first response on waking every morning at present is an overwhelming sense of dread that I'm still here and nothing's changed.
Or it has changed. . .and not for the better.

But so glad we could accommodate him by being ill so that he has a venue for his comedy routine.
I dare him to come here and personally help me with my attitude adjustment.

I appologise for the rant. I feel like I'm looking out over the abyss while Dr. Dolittle here does a song and dance for the occasion.

 

[Wildcat]

..

'Dr Doolittle' Phil Hammond has joined forces with Dr Esther Crawley.

So we can only expect him to Do Little.
.

 

[Esther12]

More info here: http://justpaste.it/g2yr

From: https://twitter.com/johnthejack/status/497095739932413953

I don't see how someone can be making their money from CBT/GET for CFS and have any interest in allowing patients to make informed decisions about their care without actively working for the release of the PACE trial's protocol defined outcome measures.

 

[Esther12]

Just happened to end up reading an old thread about an AYME document Hammond promoted on twitter - nothing terribly exciting, but I thought I may as well post a link: http://forums.phoenixrising.me/index.php?threads/afme-ayme-guide-for-children-with-m-e.29969/

 

[MeSci]

to all this.

Arise, Sir Phil...?

(PLEASE, NO!!!)

It will be Dr Phil Off-switch for me from now on.

 

[MeSci]

Have just been reading details of the affair in more detail, and can't find anything that says directly that the Patients Association supports any sides re ME treatment. All I can find is the views and activities of Hammond and the fact that he is their Vice-President.

I can't find anything to support John Peters's claim that "In steps the Patients Association and, to the disbelief of people with ME, it sides with the proponents of CBT, with Dr Hammond."

Does the fact that someone is one's Vice-President mean that an organisation supports all their beliefs and activities?

I know that there have been/are problems with certain heads of organisations like Action for ME, but these have been largely due to influence on the policies and articles of the organisation.

Can anyone else find any statements, articles, etc., by the PA that illustrate their support for psychology-based treatment for ME? (I searched their site briefly using various ME-related terms but found nothing relevant.)

 

[Roy S]

This is extensive background on the subject by John Peters, Swansea.
　
http://justpaste.it/g2yr

 

[MeSci]

This is extensive background on the subject by John Peters, Swansea.
　
http://justpaste.it/g2yr

@Esther12 posted that, and I've read it, but thanks.

 

[JohntheJack]

I haven't seen this on the forum yet...

It's a very interesting letter and response in the UK's Daily Telegraph re CBT for CFS/ME.

I think the letter is particularly well constructed and argued.
And I was surprised by the response.
The Daily Telegraph is one of the most popular national 'broadsheet' dailies in the UK.

Dr Le Fanu's online health clinic, Friday 1st August 2014
http://www.telegraph.co.uk/health/1...ine-health-clinic-Friday-1st-August-2014.html



Then he continues with the details...

Thanks, Bob for posting about this and for your words of support.

It seems to me that there are two ways to effect change. One way is through research. The other way is political.
We know ME is a physical illness. We know the evidence supports us. We know there is no evidence to support the 'psychological element' and the use of CBT (and GET).
We need to make ourselves heard. We need to force (through argument) the decision-makers to do what is right.
Few can do anything about the research. We have to leave that to others more qualified.
All of us can help drive political change.

I hope all those who agree with me will contact https://twitter.com/PatientsAssoc or contact them here http://www.patients-association.com/ and (politely, of course) make sure they know what you think.

This is an organization which claims to speak for patients. We are patients.

 

[JohntheJack]

Have just been reading details of the affair in more detail, and can't find anything that says directly that the Patients Association supports any sides re ME treatment. All I can find is the views and activities of Hammond and the fact that he is their Vice-President.

I can't find anything to support John Peters's claim that "In steps the Patients Association and, to the disbelief of people with ME, it sides with the proponents of CBT, with Dr Hammond."

Does the fact that someone is one's Vice-President mean that an organisation supports all their beliefs and activities?

I know that there have been/are problems with certain heads of organisations like Action for ME, but these have been largely due to influence on the policies and articles of the organisation.

Can anyone else find any statements, articles, etc., by the PA that illustrate their support for psychology-based treatment for ME? (I searched their site briefly using various ME-related terms but found nothing relevant.)

I emailed the PA (footnote 16 at that link from Roy and Esther). They brushed me off.
Are you happy for an organization which claims to represent you to have as one of its V-Ps a man who supports CBT for ME? I am not.
Did I look to engineer a bit of a row? Maybe. Did I sensationalize things a little bit in that line you quote? Maybe.
I make no apologies. They had plenty of opportunities to disassociate themselves from Hammond's view on CBT and from CBT for ME generally. They didn't.

This issue is black and white. It permits no greys. ME either does or does not contain a psychological element. CBT either is or is not effective a treatment for ME.
I know where I stand.
It's like they used to say in the 60s: you're either part of the solution or part of the problem. The PA is part of the problem unless it stands four-square behind us.

 

[MeSci]

I emailed the PA (footnote 16 at that link from Roy and Esther). They brushed me off.
Are you happy for an organization which claims to represent you to have as one of its V-Ps a man who supports CBT for ME? I am not.
Did I look to engineer a bit of a row? Maybe. Did I sensationalize things a little bit in that line you quote? Maybe.
I make no apologies. They had plenty of opportunities to disassociate themselves from Hammond's view on CBT and from CBT for ME generally. They didn't.

This issue is black and white. It permits no greys. ME either does or does not contain a psychological element. CBT either is or is not effective a treatment for ME.
I know where I stand.
It's like they used to say in the 60s: you're either part of the solution or part of the problem. The PA is part of the problem unless it stands four-square behind us.

I appreciate your raising awareness of this issue.

I would not dispute that there may be a psychological element to ME, as I am one of those who believes that early and/or chronic psychological stress can damage the HPA axis, along with numerous other things. I know that some people reject this. I am still talking about long-term, quite-likely permanent, physical damage caused by the stress (and/or other factors).

However, I use analogies such as putting a bullet back in a gun to treat a gunshot wound - psychological treatments for ME are inappropriate and ineffective. Treatments need to be physiologically based, which the vast majority of us agree.

Back to this specific issue, I wonder whether it would be more appropriate to press the PA to sack Hammond, as his appointment is inconsistent with their aim of serving patients, given that he is part of a monstrous psychological machine causing further damage to a large patient group.

The PA don't seem to hold views on specific health conditions. I would of course be very interested to hear if anyone can press them successfully for a comment on CBT/GET.

 

[JohntheJack]

I appreciate your raising awareness of this issue.

I would not dispute that there may be a psychological element to ME, as I am one of those who believes that early and/or chronic psychological stress can damage the HPA axis, along with numerous other things. I know that some people reject this. I am still talking about long-term, quite-likely permanent, physical damage caused by the stress (and/or other factors).

However, I use analogies such as putting a bullet back in a gun to treat a gunshot wound - psychological treatments for ME are inappropriate and ineffective. Treatments need to be physiologically based, which the vast majority of us agree.

Back to this specific issue, I wonder whether it would be more appropriate to press the PA to sack Hammond, as his appointment is inconsistent with their aim of serving patients, given that he is part of a monstrous psychological machine causing further damage to a large patient group.

The PA don't seem to hold views on specific health conditions. I would of course be very interested to hear if anyone can press them successfully for a comment on CBT/GET.

Thank you.

We'll have to agree to disagree on the 'psychological element'. I know there was and has been no psychological element to my illness.

I'd be quite happy for them to remove Hammond as a V-P.

I'm not asking for them to take sides over CBT. I just want them to follow the evidence.

 

[MeSci]

Thank you.

We'll have to agree to disagree on the 'psychological element'. I know there was and has been no psychological element to my illness.

I'd be quite happy for them to remove Hammond as a V-P.

I'm not asking for them to take sides over CBT. I just want them to follow the evidence.

Yes - I wouldn't claim that all sufferers have a psychological factor contributing to the development of their illness - just that there seem to be sound scientific reasons why it may happen in some cases, as a result of chronic HPA activation/chronically-raised cortisol levels, due to stress, which the body cannot sustain indefinitely.

But we ALL need physiological treatment, IMO, and must NOT be encouraged to exert ourselves.

 

[Esther12]

I think that it's easy to get caught up in problems with language when talking about psychological/physical illnesses/components. Regardless of those matters, and even if the sole cause of someone's illness were cognitive, patients still deserve to be spoken to honestly, fully and frankly.

The spinning of results from Pace is immoral, and does rob patients of the ability to make their own informed decisions about their health care. That Hammond works for Crawley, presumably providing CBT/get to CFS patients, without having called for the release of the trial's protocol defined outcome measures or criticised how results were spun does reflect poorly upon him IMO. The Crawley paper which claimed pace showed a 30-40% recovery rate for CBT/get is an indefensible example of this spin.

PS - hi to johnthejack, welcome to the forum, and thanks for drawing people's attention to this.

 

[JohntheJack]

I think that it's easy to get caught up in problems with language when talking about psychological/physical illnesses/components. Regardless of those matters, and even if the sole cause of someone's illness were cognitive, patients still deserve to be spoken to honestly, fully and frankly.

The spinning of results from Pace is immoral, and does rob patients of the ability to make their own informed decisions about their health care. That Hammond works for Crawley, presumably providing CBT/get to CFS patients, without having called for the release of the trial's protocol defined outcome measures or criticised how results were spun does reflect poorly upon him IMO. The Crawley paper which claimed pace showed a 30-40% recovery rate for CBT/get is an indefensible example of this spin.

PS - hi to johnthejack, welcome to the forum, and thanks for drawing people's attention to this.

Thanks, Esther.

I was provided with a PDF of this today which I think is interesting.
http://medicine.stonybrookmedicine.edu/psychiatry/news/friedberg_commentary