The MEA's response to DSM-5

pollycbr125

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hope nobody has already posted this i didnt see a thread so apologies if it has .

just been on the MEA's facebook page they have posted this in response to the question What is the MEA's response to DSM-5?

We sent this brief note to the consultation on February 22. It was written Dr Ellen Goudsmit and endorsed by the MEA:

Due to the paucity of reliable and consistent data, the concept of chronic fatigue syndrome (CFS) should not be included in DSM-5 or a note of caution is required as, at the present time, no scientist can adequately judge whether symptoms are misattributed etc (eg Jason et al, 2005, Lane et al, 2003, McGarry et al 1994, Paul et al 1999). There is more evidence of pathology in subsets and without doing specialist tests, physicians cannot draw firm conclusions.

Any reference to IBS is similarly unhelpful as the symptoms, like CFS, seem to have a multifactorial aetiology and, in the same way, one cannnot assess misattribution, 'anxiety' as opposed to valid concern, unless one does specialist tests to judge whether the 'anxiety' is justified. Some may have carcinoma of the bowel.

CBT helps some patients, to a degree. The text re CBT goes beyond the evidence. Effect size statistics re CFS tend to be modest (Jason et al 2007, Price et al 2008).

Refs:

Jason, L.A., Corradi, K., Torres-Harding, S., Taylor R.R., & King, C. (2005). Chronic fatigue syndrome: the need for subtypes. Neuropsychology Review, 15, 29-58.

Jason, LA., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, MG., Donalek, J et al. (2007) Non-pharmacologic interventions for CFS: A randomized trial. Journal of Clinical Psychology in Medical Settings, 14, 275-296.

Lane, Lane, R.J.M., Soteriou, B.A., Zhang, H., & Archard, L.C. (2003). Enterovirus related metabolic myopathy: a postviral fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 74, 1382-1386.

McGarry, F., Gow, J., & Behan, P.O. (1994). Enterovirus in the chronic fatigue syndrome. Annals of Internal Medicine, 120, 972-973.

Paul, L., Wood, L., Behan, W.M.H., & Maclaren, W.M. (1999). Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome. European Journal of Neurology, 6, 63-69.

Price, JR., Mitchell, E., Tidy, E., & Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews 2008; Issue 2. Art No.: CD001027. DOI: 10.1002/14651858.CD001027.pub2.

http://www.facebook.com/group.php?gid=68630803256&ref=ts#!/topic.php?uid=68630803256&topic=14504
 
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CBT helps some patients, to a degree. The text re CBT goes beyond the evidence. Effect size statistics re CFS tend to be modest (Jason et al 2007, Price et al 2008).
The bits I have bolded should not be overlooked.
 
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Adam, if I was a doctor reading that I would be under the impression that CBT may work for some of my CFS patients.
Sorry TeeJ. I think I see what you mean. Maybe I misread it. Or maybe its my rather vague post? I thought they were implying that becuase the text went beyond the evidence, they were overstating the case for CBT.

Either way I expect our wonderful NHS psyche docs will manage to spin the results of any so called CBT evidence to show its supposed efficacy. See my IBS post in symptoms thread for further evidence of the NHS majic medicine approach to syndromes and all things they can't be arsed to treat.
 

pollycbr125

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ill be honest if this is the MEA's response i really dont know why they bothered .not exactly batting down the hatches and fighting our corner is it?
 

valia

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ill be honest if this is the MEA's response i really dont know why they bothered .not exactly batting down the hatches and fighting our corner is it?

Typical WET response from MEA they are fighting nothing other than to maintain their own position -
sitting on the fence.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Hi pollycbr125

One of the threads on DSM-5 and DSM-5 submissions is here, so might be best to hop over there as the MEA endorsed response has already been posted in that thread along with a number of others:

http://www.forums.aboutmecfs.org/showthread.php?3062-DSM5-Ticket-back-to-Reevesville&p=72261


In response to the question "Will you be putting it on the MEA website?"

(it has been published via MEA Facebook following pressure to publish)

Tony Britton, MEA Press and PR responded:

"I don't intend to - I don't think it stands up on its news value or as propaganda."


Ahem, Mr Britton - transparency, transparency, transparency?

Neil Riley, Chair MEA Board of Trustees, told me in early March, in response to a request for clarification about whether and when the MEA intended to place a copy of the response by Dr Goudsmit that they are endorsing in the public domain:

"We had not thought of publishing it and wanted to see what the final proposals for the revision of the DSM categories will be but I can confirm that the main arguement that was put forward was that CFS should be an exclusion."

and

"If a future draft mentions CFS, a formal response on behalf of the MEA is justified and will be published in full online."

I was told in March, by Mr Riley, that a response was submitted on 11 February. This response, we are told, was submitted on 22 February.

I have sent the following to Tony Britton CCd to the Chair and am waiting for a response:

-----------------

21 April

Dear Tony,

I note that the MEA has now published, in a Facebook Discussion thread, a copy of a response to the DSM-5 which it says it is endorsing.

Since I have posted on Co-Cure and on my own sites in relation to the issue of whether the MEA intended submitting a response, could I ask for the following to be clarified, please, since I may need to amend the information already on my sites and I shall need the correct details for when I publish the response on my sites:


I was told by Neil in March that the MEA had endorsed a response by Ellen Goudsmit that had been submitted of 11 February.

Ellen Goudsmit posted on MEA Facebook Wall (in a thread that has since been removed) that she had submitted this response in a personal capacity.

You have now published a response which states that it was:

a) Submitted on 22 February.

and

b) "We sent this brief note to the consultation on February 22. It was written Dr Ellen Goudsmit and endorsed by the MEA"

Could you clarify, please:

1] Is this the same response that was submitted by Ellen Goudsmit in a personal capacity on 11 February (which the MEA said it was endorsing) or is it a further response?

2] Has the response just published been written and submitted by Ellen Goudsmit in a personal capacity, but is being endorsed by the MEA?

or

has it been written by Ellen Goudsmit in her capacity as psychological adviser to the MEA and the MEA is endorsing it and has it has been submitted under the name of the MEA or under the name of Ellen Goudsmit?

or on some other basis?

3] Is the MEA going to publish this response which they are endorsing on the main MEA website?

Many thanks,

Suzy
 
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Oh dear,even AFME did more than this - they can hardly be bothered, can they?

Thanks Suzy, you're doing a good job delving into and reporting on this vitally important matter.

thanks polly too for posting this
 
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Gerwyn

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I post this with some trepidation

Shepherd brought with him different (but perhaps related) problems in that he is, on his own admission, an active member of HealthWatch, an organisation that has received funding from both Big Pharma and the medical insurance industry. Simon Wessely has had connections with HealthWatch since its inception in 1989; soon after the press launch, he was listed as one of its leading campaigners. In its literature, one of its clearly-stated aims is to oppose "diagnoses that are misleading or false, or that may encourage unnecessary treatment for non-existent diseases", and Wessely assiduously teaches that ME is a non-existent disease.

Despite its vehement denials -- including intimidatory letters sent by its lawyers inexplicably refuting its own literature -- HealthWatch (which started life in 1989 as the Quackbusters Campaign Against Health Fraud) has an indisputable and documented track record of opposing alternative and complementary medicine and of promoting pharmaceutical interventions as the best way of ensuring public protection. It is a matter of record that patients with ME/CFS are unable to tolerate pharmaceutical interventions; given the lack of NHS care apart from psychotherapy, they not unnaturally turn to alternative and complementary practitioners in their efforts to find some relief from their distressing symptoms, so Shepherd's role in the ME Association has been controversial.

In particular, it is difficult to understand Shepherd's strong opposition to advanced investigations for those with ME, notably nuclear imaging, immunological assays and testing for RNase L and other anti-viral pathways, all of which provide evidence of the biomedical nature of ME/CFS. On 17th July 2001 Shepherd wrote to the Chief Medical Officer confirming his opposition to such testing. People with ME/CFS have incredibly up-regulated interferon production (that is what the RNase activity literature is all about), so on what evidence does Shepherd (a part time private GP) oppose such testing, when internationally acclaimed ME/CFS experts - clinicians and academics alike - support it? In his notes of the ME Alliance meeting held on 20th January 2005, Shepherd wrote: "I'm now going to reorganise what I've written, especially in the 'call for research' section. We decided not to campaign on the issue of finding a diagnostic test".
 

fingers

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Simple fingers

...as opposed to Simple Simon.

I apologise in advance for my very simplistic view among you very learned people.

ME/CFS diagnosis is a black art, not a science.

Therefore it seems inevitable that there will be a subset of those professionally or self-diagnosed who benefit from psychiatric approaches such as CBT, Lightning Process, or even GET.

Personally, I don't have a problem with this as long as it is not then inferred that all those with a ME/CFS diagnosis can benefit similarly. If there are people who are "not living a life they love" (if I was Phil Parker's marketing manager I would change this to "Continually Feeling Shit"), and these people can "live a life they love" by doing the LP, CBT, GET etc., then that's wonderful for them.

So, we can sort out a subset with these approaches, clearly identify the subsets, and move on to help the rest with retroviral research or whatever.

Sorry, I did say it was simplistic.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Oh dear,even AFME did more than this - they can hardly be bothered, can they?

Thanks Suzy, you're doing a good job delving into and reporting on this vitally important matter.

thanks polly too for posting this

Thank you, Min, but credit where credit's due - although I had been chasing the MEA since early March for (initially) a position statement on whether they intended submitting a response, then a copy of the submission they have endorsed, it was the persistence of another Facebook member who, despite repeated obfuscation, eventually extracted a copy out of the MEA.

So kudos to him.
 

starryeyes

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Sorry TeeJ. I think I see what you mean. Maybe I misread it. Or maybe its my rather vague post? I thought they were implying that becuase the text went beyond the evidence, they were overstating the case for CBT.

Either way I expect our wonderful NHS psyche docs will manage to spin the results of any so called CBT evidence to show its supposed efficacy. See my IBS post in symptoms thread for further evidence of the NHS majic medicine approach to syndromes and all things they can't be arsed to treat.
Well put. :tear: I agree with your progonostications. I'll have to check that thread out.

ME Agenda: That's amazing!
 

starryeyes

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...as opposed to Simple Simon.

I apologise in advance for my very simplistic view among you very learned people.

ME/CFS diagnosis is a black art, not a science.

Therefore it seems inevitable that there will be a subset of those professionally or self-diagnosed who benefit from psychiatric approaches such as CBT, Lightning Process, or even GET.

Personally, I don't have a problem with this as long as it is not then inferred that all those with a ME/CFS diagnosis can benefit similarly. If there are people who are "not living a life they love" (if I was Phil Parker's marketing manager I would change this to "Continually Feeling Shit"), and these people can "live a life they love" by doing the LP, CBT, GET etc., then that's wonderful for them.

So, we can sort out a subset with these approaches, clearly identify the subsets, and move on to help the rest with retroviral research or whatever.

Sorry, I did say it was simplistic.
That's brilliant fingers! And I'm a total believer of KISS - Keep It Simple Stupid :D
 

fingers

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Originally Posted by ME agenda

It has always been my understanding that Dr Shepherd did not complete his training to qualify for GP status.


aha that would explain a great deal
Gerwyn, and by that you imply that he is intelligent, not arrogant, has an open mind, and might actually be worth engaging with?
 
G

Gerwyn

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Originally Posted by ME agenda

It has always been my understanding that Dr Shepherd did not complete his training to qualify for GP status.





Gerwyn, and by that you imply that he is intelligent, not arrogant, has an open mind, and might actually be worth engaging with?
Judging by his past inputs and my personal experience I would have to say no on all counts
 

Cort

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Here's the ME Association - which I believe Dr. Shepherd is heavily associated with - Research Agenda

Current research projects include a scheme to set up a central ME tissue bank in a UK hospital. It is important to be able to identify any anomalies in the brain, spine and muscle tissue of people with ME/CFS which can be used as unique markers of ME/CFS. Tissue samples can be made available to any research group wanting to make use of them. Tissue banks already exist for Parkinsons Disease, Multiple Sclerosis and other neurological conditions, and the Fund wishes to follow these examples.

The RRF is also funding a study at the University of Newcastle into abnormalities in muscle physiology which may indicate where there is skeletal muscle involvement in the exercise-induced fatigue which is a hallmark symptom of ME/CFS. This study will take forward findings from small studies that have already examined this aspect of muscle function.

The RRF has also recently finished funding a key phase of important new research at Glasgow Caledonian University into the genetic profiles of people with ME/CFS, which will hopefully lead to a diagnostic test and effective forms of treatment.

XMRV retrovirus and ME/CFS: Funding from the Ramsay Research Fund could be made available very quickly if we receive a good quality research proposal arising out of the study published by the Whittemore-Peterson Institute on Thursday, 8 October 2009.

Each piece of research adds to the bigger picture about this illness. With your support we can continue to seek scientific evidence that will show that this illness is a real and physical one. This, in turn, will lead us to better treatments for people with ME/CFS.