Following discussion on this thread, I contacted Action for ME to express concern about the document and ask for the research evidence on which the advice in the document was based. The staff member who replied asked me for more details of my concerns and seemed bemused by the idea that there needed to be research evidence.
I therefore decided to write a personal open letter to Action for M.E. detailing my concerns and asking that the document be withdrawn.
Here is the letter. It has been sent, so please don't waste time and energy proofreading it or making suggestions for changes - it's too late.
I therefore decided to write a personal open letter to Action for M.E. detailing my concerns and asking that the document be withdrawn.
Here is the letter. It has been sent, so please don't waste time and energy proofreading it or making suggestions for changes - it's too late.
To the trustees and staff of Action for ME.
A personal plea from a long standing ME sufferer and carer.
‘Toolkit for professionals’ - A critique and request for withdrawal
I understand the SEE ME project was set up to test whether a specialist employment and benefit support and advice service, based in an ME/CFS clinic, focused on the particular needs of people with ME (pwME) would be useful both in covering perceived deficiencies in existing services and to address the particular challenges faced by pwME, and to save time and therefore money for ME clinicians to focus on their clinical care of the patient.
I can see that, having tried out such a service at one clinic, it seemed logical to pass on lessons learned from this project that are specific for pwME to the organisations that normally deal with these clients. Giving occupational health assessors, CAB advisers, and DWP job coaches and benefits assessors accurate and helpful information about ME and the particular needs and difficulties faced by pwME could be useful.
BUT the following conditions would need to be met:
The ‘Toolkit for Professionals’ fails on all 8 counts.
- The definition and description of ME/CFS should be based on recognised criteria, include post exertional malaise, and include accurate descriptions of both the symptoms and the severity and disabling effect of those symptoms. And it should not confuse the picture by implicitly or explicitly including other fatiguing conditions such as idiopathic chronic fatigue, anxiety, depression or stress related problems such as burn out.
- The description of Post Exertional Malaise should be accurate and not downplay the severity and risk of prolonged worsening from seemingly slight levels of over-activity. PEM is not just feeling a bit sicker or more tired for a few days after significantly increased activity. It can be completely disabling and last significantly longer than a few days and be triggered by quite minor increases in activity and can lead to long term deterioration.
- Any descriptions of what is known at present about causes, underlying pathology and perpetuating factors of ME must be accurate and evidence based. The biopsychosocial, central sensitisation and stress-HPA-axis models of ME are not evidence based. Treatments based these models that include changing mind set, ignoring or re-interpreting symptoms, or 'desensitisation' or overcoming deconditioning by building up activity, do not work and may cause harm. Therefore suggestions that pwME need to be encouraged to do more, or are reluctant to try, or can gradually build up their activity to beyond their current energy envelope, have no place in evidence based employment support or advice.
- Any description of severity levels and consequent levels of disability, duration of relapses and unpredictability of these needs to be accurate and not downplay the seriousness of the disease and the likelihood that the majority of pwME are too sick to work. The current document barely mentions the majority of pwME who are moderate or severe and unable to work at all.
- Pacing needs to be accurately described, including the importance of staying within the energy envelope and listening to the body. Pacing, as most experienced patients understand it, is not a structured or hour by hour planned process, and does not involve increasing activity outside the energy envelope - whether by 10% or any other amount. The key is finding the baseline, or ‘energy envelope’ and sticking within it, listening to the body and reducing activity when symptoms begin to worsen, and resting as much as needed to prevent short or long term relapses.
- The impossibility of planning ahead should be emphasised, and therefore the complete inappropriateness of terms like ‘rehabilitation’, ‘goals’, ‘gradually increasing activity’ etc. The harms likely from such approaches for the majority of pwME need to be spelled out. Setting goals and any planning which involves any increases in activity are incompatible with pacing. A proper risk assessment of any rehabilitation plan for a pwME that involves increasing activity planned ahead of time would be likely to find too great a risk of long term harm and no evidence of benefit to the pwME either in health or in employment prospects. (Even the flawed PACE trial did not manage to find any improvement in employment or objective health measures for the active therapy groups).
- Advice services for pwME on employment and benefits should focus solely on providing information about employment rights, help with achieving these with employers, and assistance with accessing benefits to which they are entitled. They should not involve goal setting or making rehabilitation plans. Such forward planning for activity levels different from what the patient is currently able to sustain is effectively medical advice and has no evidence supporting its use.
- Objective scientific evidence:
Any written or spoken advice from AfME to professionals on how to deal with pwME with respect to employment or benefits should not be based on the subjective impressions of the workers and subjective feedback from clients on a single short term project that was not studied scientifically. Experiences on a project based in a clinic and provided while the pwME are also getting clinical support from the clinic should not be extrapolated to pwME who are not being seen in that context (eg hospital clinic versus job centre). Documents and information provided to professionals must be based on rigorously carried out, scientific trials of the strategies included in the advice, with a meaningful control group, objective outcome measures and long term follow up, and specific to the type of context in which the strategy is being tested.
…………………..
Action for M.E.'s commitment to scientific evidence
The ME charities in the UK, including Action for ME, have been fighting hard to get the NICE guidelines changed on the basis that the evidence for the directive CBT and GET approach has been shown to be scientifically unsound, and the treatments can cause harm. The charities have insisted in their submissions to NICE that clinical guidelines should be based on sound and objective scientific evidence.
Given that, I find it shocking to see Action for ME undermining so dramatically and drastically all that good work by producing a document for professionals that is not evidence based, not scientific, full of false or unfounded claims and assumptions and is likely to do immeasurable harm to pwME. I find it equally shocking that an employee of Action for ME is not only be unable to provide me with any evidence, but appears puzzled at a request for research evidence supporting the approach taken in the document. Does AfME not have a commitment to provide information based on sound evidence?
………………..
The way forward
I therefore ask that AfME take responsibility for this major error of judgement in producing and disseminating this unevidenced document, and withdraw the ‘Toolkit for Professionals’ immediately, and inform the DWP, and anyone else it has been given to, that this has been done and why.
A short replacement document spelling out the seriousness of ME as a disabling illness made worse by activity and for which setting employment goals, forward planning and rehabilitation are not appropriate strategies should be provided to counteract the damage done by the Toolkit. I suggest such a document, which need not be more than a page or two, be written in consultation with expert patients who understand the importance of science and evidence (such as those on the Science for ME forum).
It should be emphasised to the DWP that pwME who are currently too sick to work should be automatically placed in the ESA support group, on the grounds that there is no evidence that making pwME set goals, or undergo any planning or rehabilitation activities leads to improved health or employment, and that expecting pwME who are currently too sick to work to participate in such processes is cruel and harmful and likely to cause worsening symptoms long term.
The current Toolkit document, with its emphasis on goal setting and rehabilitation, provides a real and present danger that more pwME will be wrongly placed in the Work Related Activity Group (WRAG) by the DWP, and expected to do inappropriate preparation for work activities and to return to work when they are too sick to sustain it, endangering their long term future health.
I urge Action for ME to act swiftly before the misinformation and unevidenced advice in the Toolkit document are disseminated any further and to counter the harm already done.
Detailed critique:
I could, when I have recovered sufficiently from writing this letter, provide a detailed critique of the inaccurate and inappropriate material in the Toolkit. However, I see no point in doing this when I am urging that the whole document be withdrawn.
To get a flavour of the specific points of contention, and the level of anger at the harm this document will cause, I suggest you read carefully the responses on the Science for ME forum thread.
I am the member called Trish on that forum. I emphasise that this is a personal letter. I am not writing on behalf of the forum or its members.
Link to thread.
………………………………………………...
And finally
I think Action for ME needs to reconsider its apparently high dependence for materials for training doctors and other professionals on the North Bristol clinic run by Hazel O’Dowd. It is not appropriate that medical advice and clinical training for a physical illness like ME/CFS is devised or presented by a clinical psychologist with no medical training.
Thank you. I look forward to your considered response.
Please note: This letter will be made public on the Science for ME forum and I intend to post any reply I receive there too.
Trish Davis.
