Republished with permission from the ME Association:

Wednesday, July 13, 2005

MEA still rejects proposed DWP guidance on M.E./CFS

On June 20th The ME Association responded to new proposed guidelines on medical aspects of ME/CFS which are being drafted to replace the current entry in the DLA Handbook. This response can be found by clicking on the following link: June 20 notice

We have now submitted a further more detailed critique of the overall content of the draft in response to what we believe is a very disappointing response from the DWP to our original criticisms of the draft. This is set out below.

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Dr Roger Thomas
DWP Corporate Medical Group
Room 623
The Adelphi
1-11 John Adam Street
LONDON WC2N 6HT


13 July 2005


Dear Dr Thomas


Re: Customer Case Management Guidance for ME/CFS


Thank you for your letter dated 28 June 2005.

Unfortunately, we were very disappointed with the response to our criticisms of the current draft in that the response clearly implies that the DWP is happy with the overall content and the way in which this advice is likely to affect the decision making process for future benefit applications from people with ME/CFS.

As the ME Association remains convinced that the overall content will only make a bad situation even worse, and that this document now requires a complete rewrite by a more balanced group of health professionals, we are therefore reluctant to enter into a consultation process which seems likely to achieve little more than minor adjustments to the wording of the current draft. We shall therefore limit this response to a critique of the areas where we feel the current draft is unacceptable. This is set out below.

We have also seen a copy of the letter sent by BRAME to the DWP in which very similar concerns to our own have been raised. And we took these concerns from the two ME/CFS charities currently involved in the consultation process to a meeting of the All Party Parliamentary Group (APPG) on ME/CFS that took place last Wednesday at the House of Commons. I understand that the Chair of the APPG will be contacting the DWP in due course.


Criticisms of the current draft


1 THE BIASED COMPOSITION OF THE GROUP THAT PREPARED THE DRAFT

We find it unacceptable that DWP guidance on an illness, which the DoH classifies as neurological (under G.93.3 of WHO ICD10), should be produced by a working group that contains two psychiatrists, but no neurologist or medical adviser from one of the main ME/CFS charities. If medical advisers from the main ME/CFS charities are invited to participate in initiatives relating to ME/CFS from NICE, the CMO, and the DoH on NHS service provision, then the DWP should also be operating in the same inclusive manner.


2 SOME OF THE STATEMENTS INDICATE THAT THE GROUP HAS NO PRACTICAL UNDERSTANDING OF THE ILLNESS THEY ARE DESCRIBING

Example: When describing the disability experienced by the severely affected it states (27: second para) that: 'There is unlikely to be any requirement for supervision either at home or out of doors, since impairment of cognitive function is usually only mild'. The clear implication that significant cognitive dysfunction does not occur in the severely affected is quite extraordinary.


3 THE GUIDANCE IS VERY MUDDLED IN PLACES

Regardless of our disagreements on content, the draft is muddled and badly written in places - especially the way in which it discusses various aspects of possible causation in more than one section.


4 INFORMATION ON CAUSATION/AETIOLOGY IS STRONGLY BIASED TOWARDS THE PSYCHOSOMATIC MODEL AND CONTAINS OPINION AND SPECULATION PRESENTED AS FACT

Causation of an illness is not usually relevant to entitlement to state sickness and disability benefits - this should be based on the person's level of ill health and disabilty.

However, this document contains numerous statements, many of which are not based on sound published research, which infer that psychosocial factors are far more important than organic ones - something that will only help to reinforce the scepticism of some DWP decision makers.

Examples include statements about personality acting as a predisposing factor and that life events such as marital separation or redundancy also act as trigger factors - none of which can be supported by reliable research evidence. Yet many of the physical trigger factors referred to in the CMO report (eg immunisations, OPs) are curiously omitted.

There is even a section - 'Is CFS a physical illness' - which makes no real attempt to summarise evidence which does support the case for ME/CFS being classified as a neurological disease. We sense that the DWP does not want to acknowledge this important decision on neurological classification.


5 INFORMATION ON SYMPTOMS AND DISABILITY IS STRONGLY BIASED TOWARDS THE PSYCHOSOMATIC MODEL

Repeated use of terms such as 'subjective', 'perception of', 'potentially disabling', 'rate themselves' strongly infers that symptoms and resulting disability have far more to do with abnormal illness beliefs and behaviour than any underlying disease process.

There is prominent referral to various psychiatric symptoms which we fully accept do sometimes occur (eg depression), as well as others which are much less common (panic attacks). By comparison, there is no mention at all of the serious and disabling neurological symptoms referred to in section 4.2.1.2 of the CMO report.

The description of the type of fatigue experienced in ME/CFS is grossly inadequate. The authors really ought to look at the description of ME/CFS fatigue contained in the CMO report.

There is also a much better description of the various levels of disability in section 3.4.3 of the CMO report.


6 THE INFORMATION ON MANAGEMENT IS OVER-SIMPLISTIC, OVER-OPTIMISTIC AND STRONGLY BIASED TOWARDS THE PSYCHOSOMATIC ILLNESS MODEL

The review of the possible value of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) is seriously unbalanced and far too optimistic about the possible overall value of these two controversial approaches to management.

The balanced way to present this information is to do the same as in the CMO report where inconsistent evidence from randomised controlled trials, patient experience and clinican experience was all given roughly equal prominence. The CMO report noted that 50% of a large sample of patients (number = 1214) found that graded exercise made them 'worse'. And in another patient survey referred to in the report, 67% stated that CBT produced 'no change' in their condition. It is therefore misleading to conclude (in 21) that 'People with established ME/CFS of moderate severity lasting one to two years are likely to need to undertake a more extensive programme of treatment, as described above (ie one that involves CBT and GET), lasting 6 to 12 months. Most people who attend hospital for treatment will make a significant improvement with appropriate treatment'.

Pain can be persistent and severe - the simple analgesics and NSAIDs referred to in section 18 of the draft are just not effective in this situation. And as pointed out in the CMO report, consideration then needs to be given to the use of more powerful analgesic drugs (eg gabapentin).

The advice on antidepressants (section 18) needs clarification as normal doses are of no benefit to the underlying disease process and many patients are highly sensitive to drugs such as fluoxetine, sertraline, citalopram that act on brain chemical transmitter systems involving serotonin (there is some recently published research on this, of which I suspect the DWP is unaware). Reference to the appropriate use of antidepressants is fine but this must also point out that these sort of drugs have to be prescribed with great care.


7 THE DRAFT FAILS TO ACKNOWLEDGE A NUMBER KEY POINTS THAT WERE CONTAINED IN THE CMO REPORT WHICH ARE RELEVANT TO BENEFIT PROVISION

For example, the use of the Fukuda diagnostic criteria is referred to in some detail in the draft (sections 4 and 5) but there is no mention of the key point - 'Current diagnostic criteria are useful only for research purposes' - contained in the CMO report. These research guidelines have serious flaws when used in ordinary clinical practice, in particular the requirement that symptoms have to be present for six months or more before the diagnosis can be confirmed. The problems with using research criteria such as Fukuda for clinical purposes are described in more detail in the ME Alliance report on Early Diagnosis - you should now have a paper copy of this report.

The CMO report also states (in section 4.4.2) that 'It is not appropriate that participation in a particular treatment regimen is made an absolute condition for the continuation of sickness/disability payments'. If the DWP is going to start providing advice on behavioural and pharmacological forms of treatment, as is clearly the case in this draft, then it requires this caveat as well.

Finally, to illustrate the quite unacceptable situation that many people still face when claiming state sickness and disability benefits, we refer to an email from one of our members that was received the day before the APPG meeting and was quoted at this meeting.

The member describes himself as being 'in continuous battle' with the DWP for a period of approximately five years. His first claim for DLA was refused. A year later his appeal was heard, which resulted in him being awarded higher rate mobility and middle rate care component. A renewal application was then refused forcing him to go through the same prolonged and stressful appeal procedure yet again. On this occasion he was awarded higher rate mobilty and higher rate care for two years. At renewal he has again been turned down - despite evidence from his own doctor that his situation remains the same.

There is clearly something seriously wrong with a benefit assessment system which makes such inconsistent decisions and causes such distress to claimants. So the ME Association just cannot understand why the DWP is now considering issuing the type of unhelpful medical guidance that has been drafted.

We do, therefore, hope that a change of mind can occur - even at this rather late stage in the process.

Yours sincerely

Dr Charles Shepherd
Medical Adviser, ME Association

4 Top Angel
Buckingham
MK18 1TH

For direct link to original MEA's post click here!