UK: Department Work & Pensions Assessors Training Guide to ME/CFS Published - 28 May 2014

[Bob]

I don't understand the need for, or purpose of, this document. In the UK we're always told that decisions are made on the basis of need (i.e. in response to the level of disability) and not on the basis of the illness/disease that the claimant has. So why is it necessary to go into details about e.g. how ME/CFS is categorised by WHO, or what the alleged predisposing or perpetuating factors are? Shouldn't assessors simply need to know how to assess the level of disability?

 

[N.A.Wright]

Only to add that this document is intended for the assessors i.e. Atos Health Professionals at the medical assessment and presumably delivered as part of their 'resource-pack' and via training, although undoubtedly it will used by the actual DWP decision-maker when an actual decision as to entitlement is made or when problems arise with a claimant asking for a reconsideration or moving to appeal.

I am also wondering as to the impact of this document on DLA/Personal Independent Payment, but that's another kettle of sardines...

Apologies - I mis/skipped/read the intro - focussed on decision maker and missed all the HCP refs. The decision makers will have something that fits into this doc. But in fact this isn’t new, it’s version 7 so really just an update for the HCPs (the mostly retired doctors, nurses etc who take the ATOS shilling/dollar to bulk up their NHS pensions.) The points I made above still pretty much apply, just that it relates to the examination stage as well as the decision making.

One important point – the equivocation on the WHO classification. This is important for ATOS and the other contractors because if they can argue it’s not a neurological illness then they are not required to provide a neuro specialist to do the exam, which saves them money. In fact it seems pretty clear in that large parts of the country they can not get neurologists to do the work and are relying on paper exams which can be done by any HCP, to deal with anything difficult like ME.

The guidance will apply to PIP and will be also provided to whoever takes over the ESA work from ATOS.

 

[biophile]

Oddly enough for a document from the DWP, no mention that CBT/GET does not improve employment outcomes?

At times it appears that the arguments and controversies around the aetiology of CFS/ME detract from the management of the condition itself. Following a biopsychosocial model of illness reinforces the idea of an illness having both physical and mental components with social influences. Understanding and treating CFS/ME should be less about the dichotomy of whether it is a physical illness or a mental illness and more about recognising the complex nature of the condition. The management regime offered should be effective in helping the patient and improving their condition no matter what the aetiology of the condition.

I don't like the current meme going around that etiology doesn't matter. I think it's good to want to help people no matter what the etiology is, but the recommended treatments CBT/GET make questionable claims about perpetuating factors and tend to ignore causes, apart from speculative assertions about possible causes. Etiology may be very important to treatment!

Any document purporting to summarise guidance of managing ME/CFS is medically neglegent and morally bankrupt if it does not make it clear that CBT/GET does not in itself lead to significant objective improvements on average.

 

[Bob]

The document has the finger-prints of the psychiatrists all over it, and was obviously partially written by one of them.

The DWP Training Document says:

"Evidence suggests that patients with CFS/ME use more avoidance strategies to cope with the debilitating effects of fatigue. However avoidance strategies have been associated with more fatigue and more functional impairment, including greater psychosocial disturbance in CFS/ME 10,11."

I haven't studied the references that they cite for this assertion, but it seems like a very flimsy statement to make, based on all the evidence that I am aware of.

Resting and pacing could be considered to be (adaptive) 'avoidance strategies', and these are universally employed symptom management techniques used by both ME/CFS patients and healthy people (e.g. patients and healthy people rest when feeling exhausted, and intuitively pace themselves to avoid exhaustion.)

One of the management strategies that the NICE guidelines recommend for ME/CFS is to reduce activity levels when symptoms increase. (This is an avoidance strategy.)
e.g. The NICE guidance recommends this avoidance strategy:

"It may be necessary to reduce, or even stop, some activities and increase the frequency and/or duration of rest periods to stabilise symptoms and re-establish a baseline activity level." [http://www.nice.org.uk/nicemedia/live/11824/36190/36190.pdf]

Even best-practise Graded Exercise Therapy (as per NICE recommendations) prescribes limitations and reductions in patients' activity levels in order to stabilise and manage the patients' symptoms. (First by determining 'safe' levels of activity to establish a 'baseline' which may involve drastically reduced activity levels. And then by further reducing or limiting activity levels in response to any increase in the severity of symptoms.) This could be considered to be an avoidance strategy, employed to manage the illness.

e.g. The Graded Exercise Therapy manual from the PACE trial recommends limiting or reducing activity levels when symptoms increase (i.e. an avoidance strategy) [http://www.pacetrial.org/docs/get-therapist-manual.pdf]:

It must be emphasised that extending [activity] beyond their baseline may lead to uncomfortable exercise related symptoms, and may cause difficulty maintaining the necessary frequency [of activity].

CFS/ME setbacks usually involve an exacerbation of their symptoms, leading to a significantly reduced functional capacity. Participants may describe these as a relapse’, or ‘crash’. People with CFS/ME can usually identify an increase in physical activity which may have attributed towards their setback.

[...]it is important to ascertain whether any components of the GET programme may have contributed towards setbacks, and to adapt the plan immediately to avoid difficulties.

 

[Bob]

I had to thoroughly search the PACE manual for the quotes given above.

They're worth having another look at:

"CFS/ME setbacks usually involve an exacerbation of their symptoms, leading to a significantly reduced functional capacity. Participants may describe these as a relapse’, or ‘crash’. People with CFS/ME can usually identify an increase in physical activity which may have attributed towards their setback."

"[...]it is important to ascertain whether any components of the GET programme may have contributed towards setbacks, and to adapt the plan immediately to avoid difficulties."

It was difficult to find this information in the manual - it isn't prominent and it isn't repeated regularly, if at all - the info is exceptionally under-promoted, in favour of text that promotes their discredited theory that incremental increases in activity should be prescribed regardless of symptoms.

But surely these qualifications, and warnings, re the dangers of over-exertion and the potential negative effects of GET, are important and should be written in bold red text at the top of every page, so that therapists can avoid harming their clients?

I think this demonstrates the corruption. The authors are fully aware of the dangers of over-exertion, or the text wouldn't be included, and yet it doesn't fit with their pet theory, so the information is purposely brushed over.

It's amazes me that anyone could think that an illness has a psychological basis when it is described as follows:

"CFS/ME setbacks usually involve an exacerbation of their symptoms, leading to a significantly reduced functional capacity. Participants may describe these as a relapse’, or ‘crash’. People with CFS/ME can usually identify an increase in physical activity which may have attributed towards their setback."

This hardly describes fear or (behavioural) avoidance of exertion. It describes engaging in activities and a physiological exacerbation of symptoms in response to exertion.

 

[N.A.Wright]

Any document purporting to summarise guidance of managing ME/CFS is medically neglegent and morally bankrupt if it does not make it clear that CBT/GET does not in itself lead to significant objective improvements on average.

I don't think there's any attempt to summarise ALL guidance of managing ME/CFS. The purpose of the document will be defined with the structure of Government policy and the Law, defined in: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/252637/wca-handbook.pdf

which says: (my bolding)

All Health Care Professionals who give advice relating to Employment and Support Allowance must be approved by the Secretary of State for Work and Pensions. Approval involves specific training; successful completion of various stages of the approval process, and ongoing demonstration that the work being carried out meets a satisfactory standard. The ESA approved HCP is required to provide advice to the DWP Decision Maker in accordance with the current guidance issued by the Department for Work and Pensions.

Approved HCPs may be either employed or contracted to work on a sessional basis.

The role of the HCP is to help Decision Makers reach fair and proper decisions on benefit entitlement, by providing advice which is:

Legible and concise
Fair and impartial
Medically correct
Consistent and complete
In accordance with the relevant legislation

In carrying out this function, ESA approved HCPs act as specialist disability analysts. The role of the disability analyst is different from the more familiar clinical role of reaching a diagnosis and arranging treatment. For the disability analyst, a precise diagnosis is of secondary importance. The primary function is to make an assessment of how a person's day to day life is affected by disability, and to relate this to the legislative requirements.

For ESA, the advisory role of the approved HCP falls into four main areas:

Advice to the Department for Work and Pensions Decision Maker to confirm that a claimant satisfies any one of the Support Group criteria or any of the criteria for treating the claimant as having limited capability for work.

Further advice or clarification requested by the Decision Maker.

Application of the ESA LCW/LCWRA medical assessment, providing an objective and impartial assessment of the claimant's functional ability for the Decision Maker.

In reassessment cases, where the claimant has previously been subject to the ESA LCW/LCWRA Medical Assessment (i.e. a full ESA 85 has been completed) the HCP will scrutinise the available medical evidence, in order to advise whether a further LCW/LCWRA medical assessment is required.

We can dispute what is meant by 'fair' but the Office of the Chief Medical Adviser isn't obliged to provide training material (as in this guidance) that actually ensures that HCP could act fairly - after all the OCMA owes it's allegiance to the Government, not the claimant. And the HCP is providing a service to the Decision Maker, not the claimant. And no part of the process is concerned with the well being of the claimant, other than the guiding policy position that 'work is good for you' and failure to be employed is a failure of society, the economy and public health.

 

[Bob]

Any document purporting to summarise guidance of managing ME/CFS is medically neglegent and morally bankrupt if it does not make it clear that CBT/GET does not in itself lead to significant objective improvements on average.

I don't think there's any attempt to summarise ALL guidance of managing ME/CFS. The purpose of the document will be defined with the structure of Government policy and the Law, defined in: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/252637/wca-handbook.pdf

We can dispute what is meant by 'fair' but the Office of the Chief Medical Adviser isn't obliged to provide training material (as in this guidance) that actually ensures that HCP could act fairly - after all the OCMA owes it's allegiance to the Government, not the claimant. And the HCP is providing a service to the Decision Maker, not the claimant. And no part of the process is concerned with the well being of the claimant, other than the guiding policy position that 'work is good for you' and failure to be employed is a failure of society, the economy and public health.

You've got a point that this training document is not directly related to medical care. It's purely to aid the process of benefit assessments. But if the DWP are putting out incorrect information about an illness, in relation to the training of their medical assessors, this has a direct impact on patients. The document directly affects the care, well-being, safety and lives of patients, because it affects what state welfare benefits they are entitled to.

Perhaps there are human-rights laws, or other laws, that would enable patients to challenge sections of this document.

This is an extract from your quote (my bolding):

The role of the HCP is to help Decision Makers reach fair and proper decisions on benefit entitlement, by providing advice which is:

Legible and concise
Fair and impartial
Medically correct
Consistent and complete
In accordance with the relevant legislation

 

[Firestormm]

https://www.facebook.com/actionforme/posts/10152454268468209?notif_t=notify_me
Action for M.E.
48 mins ·

The Department of Work and Pensions training guide to M.E./CFS for health care professionals engaged in benefit assessment work on its behalf will be discussed at the next meeting of the APPG on M.E.

Annette Brooke, Chair of the group, said, “The next meeting of the APPG is currently being finalised and will take place shortly. I have arranged for this issue to be on the agenda and will invite those charities attending to agree a detailed collaborative response to the document with recommendations for any changes."

 

[Bob]

More gumf from the document. (Interesting to read about the "new disorder of Somatic Symptom Disorder"):

4.4.2.2 Diagnostic and Statistical Manual of Mental Disorders

The DSM-IV did not include the diagnosis of CFS/ME. However Neuroasthenia was classified as Undifferentiated Somatoform Disorder if the symptoms persisted for longer than 6 months. In the updated DSM-V (released in 2013) there has been a change with a new category named ‘Somatic Symptoms and Related Disorders’ replacing Somatoform Disorders. Undifferentiated Somatoform disorder has been removed and a new disorder of Somatic Symptom Disorder included.

Diagnostic criteria for Somatic Symptom Disorder are

A. One or more somatic symptoms that are distressing or result in significant disruption of daily life

B. Excessive thoughts, feelings or behaviours related to the somatic symptoms or associated health concerns as manifested by at least one of the following:

1. Disproportionate and persistent thoughts about seriousness of one’s symptoms.
2. Persistently high level of anxiety about health or symptoms
3. Excessive time and energy devoted to these symptoms or health concerns​

C. Although any one somatic symptom may not be continuously present the state of being symptomatic is persistent (typically more than 6 months)

The DSM-V emphasizes that the diagnosis of Somatic Symptom Disorder depends on the distressing somatic symptoms PLUS the abnormal thoughts or behaviours in response to the symptoms (i.e. maladaptive thoughts) rather than an absence of medical explanation for somatic symptoms. It clearly states that it is not appropriate to give a mental disorder diagnosis solely because a medical (physical) cause cannot be found.

 

[Bob]

Offer people with severe CFS/ME an individually tailored activity management program as the core therapeutic strategy.

Is there any evidence to support this recommendation?

 

[Bob]

They've included a bit about the National Outcomes Database study, which assessed clinical outcomes in England's specialist NHS services after CBT/GET.

Note my bolded text ("there was far less improvement in levels of physical function in a clinical setting") should read "there were no clinically significant improvements in levels of physical function in a clinical setting."

Recent research reviewed treatment outcomes for patients attending NHS CFS/ME specialist services19. One of the aims of the research was to see whether the outcomes were similar to those of the PACE trial. Patients attending NHS specialist CFS/ME services were treated with CBT, GET, a combination of both or activity
management, in group and/ or individual treatment sessions of varying numbers and lengths. The evidence showed that although improvements in fatigue similar to the PACE trial were present, there was far less improvement in levels of physical function in a clinical setting. One of the factors postulated for the difference was the amount of treatment patients underwent. In NHS it appeared that patients were offered 5-6 sessions, whereas in the PACE trial it was 12-14 sessions. There may also be differences in the content of the treatment offered between the trial and clinical settings. However it is clear that further research is required for further clarification of treatment outcomes.

19 Crawley E, Collin SM, White PD, Rimes K, Sterne JAC, May MT, and CFS/ME National Outcomes Database.
Treatment outcomes in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database.
Q L Med 2013; 106: 555-565

 

[A.B.]

The DSM-V emphasizes that the diagnosis of Somatic Symptom Disorder depends on the distressing somatic symptoms PLUS the abnormal thoughts or behaviours in response to the symptoms (i.e. maladaptive thoughts) rather than an absence of medical explanation for somatic symptoms. It clearly states that it is not appropriate to give a mental disorder diagnosis solely because a medical (physical) cause cannot be found.

Are they saying that when somebody complains a lot about symptoms, it's a mental disorder, but when somebody doesn't, it's not? In the latter case, what is it then? Do they ever admit simply not knowing what the problem is?

 

[Bob]

Are they saying that when somebody complains a lot about symptoms, it's a mental disorder, but when somebody doesn't, it's not? In the latter case, what is it then?

I was wondering about that as well. As you say, the diagnosis relies entirely on how a patient reacts to their symptoms.
It's a really stupid diagnostic criteria.

 

[N.A.Wright]

You've got a point that this training document is not directly related to medical care. It's purely to aid the process of benefit assessments. But if the DWP are putting out incorrect information about an illness, in relation to the training of their medical assessors, this has a direct impact on patients. The document directly affects the care, well-being, safety and lives of patients, because it affects what state welfare benefits they are entitled to.

Perhaps there are human-rights laws, or other laws, that would enable patients to challenge sections of this document.

The problem here though is that the DWP's Chief Medical Advisor (CMA) - effectively the publisher of the document, is also the arbiter for the DWP of what is 'correct'.

Some people might see an unhappy coincidence in the current (retirement recently announced) CMA having previously been an employee of CAPITA (widely knowns as CRAPITA because of its numourous failings in local government contracts), and the fact that CAPITA is adminstrator of the PIP replacement of Disability Living Allowance and also a prime candidate to takeover the ESA contract when ATOS pulls out next year. The odds look strong on the current CMA finding a new position with his old firm given how favourably the Government looks on the revolving door for jobs between the private sector and high ranking civil servants who do the Government's bidding.

It will be interesting to see if the APPG can make any headway but there is a very well established position in Whitehall (UK Civil Service) that expert (in this case the CMA) opinion is not challengable by Ministers, except of course when Ministers want to challenge, but that's done in private and is deemed not happen.

I don't know if appeal to specific Laws would be necessary. On the grounds that it's maladministration, a complaint to the Parliamentary Ombudsman might be a more direct route, although it's no means as direct as it might appear from the Ombudsman's website. The key thing is for a complainant to have their local MP onside and to have the MP take the formal complaint forward. The Ombudsman process is grindingly slow and there's no guarantee of a case going forward, it does have the advantage though of being cost free. Waiting for any outcome from the APPG would be essential and any MP taking the complaint forward would ideally work with the APPG - assuming the APPG hasn't been able to have any influence without need for a complaint. One problem may be in demonstrating that any individual has been harmed by the poor advice of the CMA - that may deter the Ombudsman from taking a case forward.

 

[MeSci]

"...avoidance strategies have been associated with [...] psychosocial disturbance in CFS/ME 10,11."

Really? That's news to me. Where do they get this stuff from?!? (Rhetorical question.)

Their References:

10 Ray C, Jeffries S, Weir WR: Coping and other predictors of outcome in chronic fatigue syndrome. J
Psychosom Med 1997; 43:405-415;
http://www.ncbi.nlm.nih.gov/pubmed/?term=Coping and other predictors of outcome in chronic fatigue syndrome.

11 Antoni MH, Brickman A, Lutgendorf S, Klimas A, Imia-Fins A, Ironson G, Quillian R, Miguez MJ, van Riel
F, Morgan R, Patarca R, Fletcher MA: Psychosocial correlates of illness burden in chronic fatigue syndrome,
Clin Infect Dis 1994; 18:S73-S78
http://www.ncbi.nlm.nih.gov/pubmed/?term=Psychosocial correlates of illness burden in chronic fatigue syndrome&report=abstract

I'm surprised to see Patarca being involved in a paper like that, having just found an extremely interesting paper here co-authored by him, Klimas and others which could explain why many of us are deficient in minerals including sodium, and may provide clues as to how to prevent this. The paper is a lot more equivocal about psychological issues than the earlier one. One hopes that he has seen the error of his previous work (which does happen in good scientists).

Perhaps someone should point this out to the UK government.

 

[N.A.Wright]

I'm surprised to see Patarca being involved in a paper like that ........

Science (and hopefully scientists !) moves on - the number of paper's published in 1994 whether in medicine, cosomology, robotics etc etc, that would now be considered wrong, misguided, imprecise, confused etc etc, would probably fill a goodly number of (2014 capacity) hard drives.

 

[Esther12]

I've not been following this closely, but @Dolphin just mentioned in another thread that an acknowledgement was dropped from later versions of this:

Acknowledgement from version 1
“The author and Medical Services gratefully acknowledge the contribution of the authors (Professor S Wessely, Professor P D White and Professor M Aylward) of the enclosed articles and their kind permission to reproduce them in this module. In addition the author would like to express his gratitude to Dr P Dewis for his helpful comments and suggestions.”
Chronic Fatigue Syndrome - Guidelines for the Disability Analyst
Version 5 Final
Reference: MED/S2/CMEP~0017

https://www.whatdotheyknow.com/requ...D S2 CMEP 0017 Mod 6 Chronic Fatigue.pdf.html

 

[Esther12]

Also, this seems to include link to a different, maybe older, CFS/ME/FMS thing: https://www.whatdotheyknow.com/request/training_briefing_and_knowledge#incoming-289774

HTML version: https://www.whatdotheyknow.com/requ...Syndrome CFS and Fibromalgia 3 Final.pdf.html

I may be confused, and I don't think I ever read all of the initial one either.

 

[Iquitos]

Don't forget that UNUM has a contract with Works and Pensions to "limit disability awards." This is part of a new push by UNUM and Wessely and gang to limit UNUM's and UK's W & P's payouts. They hope that these patients will just die off. We'll see more from Wessely and the psychobabblers about now. They are terrified of the results of real biomedical research that have come out recently and will be coming out soon. It's another propaganda campaign unfolding before our eyes.

 

[Esther12]

Don't forget that UNUM has a contract with Works and Pensions to "limit disability awards."

Do you have a link for that? I've not seen that reported elsewhere.