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

[Firestormm]

4 June 2014

DWP publishes assessor training guide to M.E.

"The Department of Work and Pensions (DWP) has made public the training document on M.E./CFS given to Health Care Professionals approved by the DWP Chief Medical Adviser to carry out benefit assessment work.

You can read the document. Action for M.E. was not consulted on its content. However, DWP Medical Policy Advisor, Dr Mark Allerton, has agreed to our request to be consulted in the next review of the document."

Not very pleasant reading - at least in parts...

 

[Esther12]

Any bits you want to pull out for us?... Go on, don't make me read more of this stuff!

 

[TigerLilea]

What a load of sh*t!!

 

[Valentijn]

There is no generally accepted theory of the aetiology of CFS/ME. To date there has been no single cause found and CFS/ME is probably best regarded as a multifactorial heterogeneous illness with physical, psychological and social factors all playing a part.

Many theories have been proposed for pathophysiology of CFS/ME but the mechanisms remain elusive. Multiple studies have shown abnormalities in brain structure/function (including neuroendocrine responses) and muscular function, sleep disturbance, infectious factors and immune function but these often remain isolated findings which require further study and verification in clinical trials.

Predisposing factors identified include personality factors of neuroticism and introversion.3 Inactivity in childhood has also been identified.4 To date no genetic abnormalities have been found although twin studies have shown a familial predisposition.5
Precipitating factors include an infectious trigger in up to three quarters of patients
6. Infectious agents reported include Epstein Barr virus, as well as non-specific infections like a cold or a ‘flu like’ illness. CFS/ME has also been reported after Q fever and Lyme disease. Serious life events (such as death of close family members or loss of a job) have been associated with precipitating CFS/ME7
Psychological and social factors appear to be involved in perpetuating the symptoms of the illness. Factors associated with increased fatigue and severity of the condition include: a strong belief in the physical cause of the illness, a focus on bodily sensations and a poor sense of control over the complaints.
8,9. 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/ME10,11

There are two classifications in use in the ICD 10. CFS/ME can be classified under neurological disorders as G93.3 (Benign myalgic encephalomyelitis), or under neurotic, stress-related and somatoform disorders as F48.0 (neurasthenia).

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.

Having to stop work or education is generally detrimental to people’s health and well-being. Address each person’s ability to continue in education or work early, and review it regularly.

Offer cognitive behavioural therapy (CBT) and/or graded exercise therapy (GET) to people with mild or moderate CFS/ME, and provide them for those who choose them, because these are the interventions for which there is the clearest research evidence of benefit. Components of CBT or GET may be offered together with activity management strategies, sleep management and relaxation techniques, where the full CBT or GET program is not appropriate.

Graded Exercise Therapy (GET)
An evidence-based approach to CFS/ME that involves physical assessment, mutually negotiated goal-setting and education. The first step is to set a sustainable baseline of physical activity, then the duration of the activity is gradually increased in a planned way that is tailored to the person. This is followed by an increase in intensity, when the person is able, taking into account their preferences and objectives, current activity and sleep patterns, setbacks/relapses and emotional factors. The objective is to improve the person’s CFS/ME symptoms and functioning, aiming towards recovery.

Avoid
• Specialist management programs which are delivered by practitioners with no experience in the condition
• Giving advice to person to undertake unsupervised or unstructured vigorous exercise
• Various drugs such as monoamine oxidase inhibitors, glucocorticoids, mineralocorticoids, thyroxine, antiviral agents, methylphenidate, dexamphetamine

An article published in The Lancet in March 2011 gave details of results from a randomised trial - PACE study - which looked at Adaptive Pacing Therapy (APT), Cognitive Behaviour Therapy (CBT), Graded Exercise Therapy (GET) and Specialist Medical Care (SMC) in the treatment for Chronic Fatigue Syndrome (CFS). The results suggested that CBT and GET could safely be added to SMC to moderately improve outcomes for CFS but APT was not an effective addition17. There were no differences between the groups of reported serious deterioration or serious adverse reactions.

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.

Factors that have been associated with a poorer prognosis include20
• Older age :
• Longer illness duration
• Fatigue severity
• Co-morbid psychiatric illness
• Physical attribution of symptoms

 

[Firestormm]

4.6.1
Ongoing debate

Following release of the NICE guidance some patient organisations within the UK (ME association and Action for ME) released survey results which indicated that people with CFS/ME found pacing to be more beneficial and also reported that CBT and GET are sometimes harmful.

The report of the Chief Medical Officer’s working group 16 defined the principles of pacing as “an energy management strategy in which patients are encouraged to achieve an appropriate balance between rest and activity. This usually involves living within physical and mental limitations imposed by the illness, and avoiding activities to a degree that exacerbates symptoms or interspersing activity with periods of rest. The aim is to prevent patients entering a vicious circle of overactivity and setbacks, while assisting them to set realistic goals for increasing activity when appropriate.“

An article published in The Lancet in March 20 11 gave details of results from a randomised trial - PACE study - which looked at Adaptive Pacing Therapy (APT), Cognitive Behaviour Therapy (CBT), Graded Exercise Therapy (GET) and Specialist Medical Care (SMC) in the treatment for Chronic Fatigue Syndrome (CFS). The results suggested that CBT and GET could safely be added to SMC to moderately improve outcomes for CFS but APT was not an effective addition 17. There were no differences between the groups of reported serious deterioration or serious adverse reactions.

The ME Association issued a press statement on the results of the PACE trial on the 18th of February 2011, which stated that ‘the results are at serious variance to patient evidence on both cognitive therapy and exercise therapy’. This was based on results from a survey performed by the ME Association in 2008 18, during which a comprehensive questionnaire was sent to people with Chronic Fatigue Syndrome and their carers, which suggested that pacing was found to be more beneficial than Graded Exercise therapy.

Recent research reviewed treatment outcomes for patients attending NHS CFS/ME specialist services 19 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.

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.

 

[A.B.]

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.

Funny how the only ones saying this are the same people who a) ignore research showing that it's a physical illness, and b) propose "mental" treatments.

I read a good part of this guide and it comes across as somewhat incoherent, as if somebody had written a reasonable text that was then "sanitized" by a BPS model proponent.

 

[Bob]

For anyone not familiar with UK politics, this is a training manual for the government's welfare benefit assessors issued by the Office of the Chief Medical Adviser within the Department of Work and Pensions (DWP). So everyone in the UK claiming sickness benefits will be affected by this.

This document contains the most depressing and extreme load of nonsense that I've read about ME/CFS for quite a while. And that's saying something!

Proponents of the (discredited) psychiatric model of ME/CFS have clearly written (or had a disproportionate influence on) this document, and the Office of the Chief Medical Adviser has clearly allowed itself to be hijacked by the psychiatric lobby. We know that this isn't a new scenario, but this is the opposite of progress. It's a throwback to the darkest days of ME/CFS when the psychiatric lobby wrote the DWP's literature.

I'm really feeling annoyed about this. How the heck was this allowed to happen? I thought that some of our charities were working closely with the Chief Medical Adviser and had a good working relationship.


I'm going to quote some choice extracts, but I'm probably repeating much of what Val quoted above...

CFS/ME is probably best regarded as a multifactorial heterogeneous illness with physical, psychological and social factors all playing a part.

All of the following assertions are based on really weak, inconsistent, pathetic and/or discredited research:

Predisposing factors identified include personality factors of neuroticism and introversion.3 Inactivity in childhood has also been identified.4

Psychological and social factors appear to be involved in perpetuating the symptoms of the illness.

Factors associated with increased fatigue and severity of the condition include: a strong belief in the physical cause of the illness, a focus on bodily sensations and a poor sense of control over the complaints 8,9.

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.

Note that 'avoidance strategies' would include universally employed adaptive symptom management techniques such as resting and pacing, and the management strategies that NICE recommends for ME/CFS, and the latest types of Graded Exercise Therapy which recommend reducing activity levels when symptoms increase.

There are two classifications in use in the ICD 10. CFS/ME can be classified under neurological disorders as G93.3 (Benign myalgic encephalomyelitis), or under neurotic, stress-related and somatoform disorders as F48.0 (neurasthenia).

Note the UK's Department of Health officially considers ME/CFS to be neurological (G93.3), so this document isn't consistent with government policy:

The Department of Health has always relied on the definition set out by the World Health Organization in its International Classification of Diseases (ICD) under ICD Code G93.3, subheading ‘other disorders of the brain’.

 

[Bob]

"...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

 

[Bob]

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.

And yet NICE recommends an 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

 

[Firestormm]

APPG takes place tomorrow and this document is on the agenda. Statement from MEA tomorrow. The document was reviewed and published without charity approval... more to follow tomorrow and thereafter...

 

[snowathlete]

Hope that didn't break any rules. Just the most energy efficient way of saying everything I had to say about this.

 

[alex3619]

Hope that didn't break any rules. Just the most energy efficient way of saying everything I had to say about this.

Ummm ... that pile isn't big enough.

 

[alex3619]

Patient groups in the UK prefer adaptive pacing rather than cognitive behavioural therapy and graded exercise therapy in the management of CFS/ME

This is from a questionnaire to be answered before completing the course. There is no right answer, its a bad question. UK patient groups, I think, prefer pacing. Pacing is NOT Adaptive Pacing. UK patient groups also typically do not support either GET or CBT.

The closest answer would be false, but this would only serve to further confuse the situation.

Other questions have similar flaws.

 

[Valentijn]

I read a good part of this guide and it comes across as somewhat incoherent, as if somebody had written a reasonable text that was then "sanitized" by a BPS model proponent.

I got the impression that they had no understanding of the material or studies that they were referring to. Basically just parroting summaries of info from a variety of sources, and coming to confused and contradictory conclusions.

 

[Sean]

That psychobabble propaganda sure has infiltrated to the very core of public debate & governance.

How convenient.

For some.

 

[Firestormm]

ME Association - 5 June 2014

Website: http://www.meassociation.org.uk/201...enefits-assessors-and-so-can-you-5-june-2014/

Facebook: https://www.facebook.com/photo.php?...65.545018383&type=1&theater&notif_t=notify_me

We look at the new edition of the official ME/CFS guidance for benefits assessors (and so can you!)

Medical Services at the Department for Work and Pensions have published a new version of their ME/CFS training document for health care professionals carrying out benefit assessments. The 50-page document was published on 28 May 2014 and can be downloaded HERE.

After a quick, initial read, ME Association medical adviser Dr Charles Shepherd comments:

Although this new guidance for health professionals who are assessing DWP benefit claims is now finalised and not going to be the subject of any immediate further review, The ME Association will be sending in detailed comments and suggestions regarding our concerns about numerous aspects of the final version. We will also be requesting a meeting with Dr Mark Allerton at the DWP to discuss them.

A quite extensive consultation process took place during the preparation of this guidance and The MEA had input into this process.

Some of our input was accepted. For example, from p21:

"The ME Association issued a press statement on the results of the PACE trial on the 18th of February 2011, which stated that ‘the results are at serious variance to patient evidence on both cognitive therapy and exercise therapy’. This was based on results from a survey performed by the ME Association in 200818, during which a comprehensive questionnaire was sent to people with Chronic Fatigue Syndrome and their carers, which suggested that pacing was found to be more beneficial than Graded Exercise therapy."​

And whilst we are pleased to see that the ‘Further Reading’ section refers to the MEA purple booklet – ME/CFS/PVFS: An Exploration of the Key Clinical Issues – as a source of information, the edition that is referenced is the one that was published in 2001!!

Paper copies of the current (2013) edition were, in fact, sent to DWP HQ during the consultation process.

But other parts of our submission were not accepted

It should be noted that the final guidance was only signed off after it had been reviewed by a clinician nominated by the Royal College of Physicians.

When I have had time to study the guidance in more detail, I will provide further details of what we intend to do.

In the meantime feedback from the ME patient community is very welcome. Please email meconnect@meassociation.org.uk

Dr Charles Shepherd
Hon Medical Adviser, MEA
Member of DWP Fluctuating Conditions Group

 

[N.A.Wright]

No one should expect balance from this document, the Patient Orgs have done their best to have a patient perspective included, but the role of the Orwellian named ‘decision maker’ is not one of impartial judge. The decision maker – it’s a generic term in the sense that the implied decision may take place within a number of benefit processes – is always going to be following Government defined policy and will therefore always side with the Government over the claimant where there is obvious divergence from the defined policy. Short of an overwhelming burden in favour of the claimant, presumption of refusal of benefit is implicit. The guidance for decision makers is about providing the decision maker with a background which supports their role – it’s not about giving a balanced view of the medical knowledge of an illness.

Most decision makers (whatever their pay grade, job title etc) are never going to read this Guidance document – it’ll be used when a decision maker is faced with a claim where ME/CFS is the primary illness and the medical evidence (ATOS report) doesn’t allow outright refusal and the decision maker is forced to actually think through making a basis for refusal or allocation to different levels of benefit.

As far as patients are concerned, the guidance will probably be most significant in the appeals process and anyone who doesn’t have the resources to fight their own corner needs to alert their welfare rights advisor to the existence of the document. I think we can expect to see it surfacing in Tribunals fairly quickly.

 

[surethom]

It's disgusting really NICE & the benefits you are too I'll to work but not I'll enough to pass stupid questing to get benefits.

Everyone can see your ill your symptoms say you are ill BUT because all blood tests come back normal, obviously you are not ill.

Will we ever get a blood test to show yes you have a problem! Personally I still think we have active viruses that cause up to be ill & still active viruses keeping us ill it's just No one has a test that can detect the viruses.

 

[justy]

Actually nearly made me cry...

I shouldn't read stuff like this - after reading about all the amazing things going on in research in Norway, The UK and The States on PR, after watching countless videos and presentations showing how M.E IS a biological process but with aetiology unknown, after visiting a well respected M.E clinician who KNOWS I am REALLY ill, it is shocking to read that this is what my country thinks of me.

I feel like an alien who has just landed on a foreign planet.

 

[Firestormm]

No one should expect balance from this document, the Patient Orgs have done their best to have a patient perspective included, but the role of the Orwellian named ‘decision maker’ is not one of impartial judge. The decision maker – it’s a generic term in the sense that the implied decision may take place within a number of benefit processes – is always going to be following Government defined policy and will therefore always side with the Government over the claimant where there is obvious divergence from the defined policy. Short of an overwhelming burden in favour of the claimant, presumption of refusal of benefit is implicit. The guidance for decision makers is about providing the decision maker with a background which supports their role – it’s not about giving a balanced view of the medical knowledge of an illness.

Most decision makers (whatever their pay grade, job title etc) are never going to read this Guidance document – it’ll be used when a decision maker is faced with a claim where ME/CFS is the primary illness and the medical evidence (ATOS report) doesn’t allow outright refusal and the decision maker is forced to actually think through making a basis for refusal or allocation to different levels of benefit.

As far as patients are concerned, the guidance will probably be most significant in the appeals process and anyone who doesn’t have the resources to fight their own corner needs to alert their welfare rights advisor to the existence of the document. I think we can expect to see it surfacing in Tribunals fairly quickly.

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...