Trial By Error: Action For ME’s Employment Advice

By David Tuller, DrPH

Action For ME is the largest charity for this disease in the UK. It is also the charity responsible for enabling the PACE trial through its unfortunate decision to work with the investigators to develop “adaptive pacing therapy.” This was a terrible idea from the start, for multiple reasons.

First, the PACE investigators had already demonstrated their true colors with their sub-par research and unwarranted claims going back at least a decade. Moreover, it should have been obvious to any reasonably intelligent researcher that the PACE operationalization of “pacing” transformed this intervention into something other than the self-help strategy that patients use. PACE did not investigate “pacing.” It only investigated APT—a very different animal that required patients to create diaries and schedules of activities and on and on. Yet the PACE results have routinely been used to claim that “pacing” doesn’t work. This is nonsense–and Action For ME bears much of the blame.

Action For ME’s current leadership has, thankfully, taken some major steps to repair its often-tense relationship with many in the patient community. The organization has distanced itself from Professor Esther Crawley—a good move given that her work is rife with ethical and methodological flaws. It has acknowledged the problematic nature of its involvement in PACE, and has updated the information about the illness on its site to better conform to reality. While these actions were welcome, they should have happened years earlier.

The organization also signed last summer’s open letter to The Lancet—a first. Some advised me to refuse to let Action For ME add its name, given the history. That was an interesting and provocative proposition. But I felt that the group’s public endorsement of the letter’s argument outweighed the political point that would be made by excluding it.

Despite these changes, criticisms continue. For many patients, the group’s PACE mea culpa and the revised website information, while welcome, did not adequately address all concerns. And the Science For ME forum has recently been discussing an Action For ME “tool-kit” designed for professionals advising ME patients on work-related issues. This document was based on a program called “Support, empower and employ people with ME,” which Action For ME piloted at Bristol’s NHS CFS/ME specialist service in 2015-2016.

Here’s what the tool-kit states: “The information and advice presented in this toolkit is based upon the evidence, experiences and outcomes of the SEE M.E. service, and aims to improve employment outcomes for people with M.E. by informing the practice of those professionals working with them.”

Unfortunately, it is hard to trust much of the information coming out of clinical services that generally adhere to the notions promoted by the GET/CBT ideological brigades. Whatever the possible value of the SEE ME program, conducting a test-run at a clinic strongly advocating the now-discredited treatment paradigm was a short-sighted move–that is, if Action For ME hoped to foster credibility for this endeavor among patients. That clinic environment could also explain the overall impression created by the tool-kit, which appears to be suggesting that the main thing many or even most ME patients need to have a fulfilling work life is some encouragement that they can do it.

To be frank, this document comes across largely as a light form of biopsychosocial mumbo-jumbo. Patients are generally desperate to work. The idea that they need “encouragement” to do so parallels the insulting and debunked claim that they have “dysfunctional cognitions” about the illness and an irrational fear of activity. That is likely not the intent of the tool-kit—but that’s certainly how it reads to me. It is therefore troubling that this document has apparently been widely distributed to bureaucrats at the Department of Work and Pensions as authoritative professional advice.

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As usual, the smart patients on the Science For ME have been all over this. One of them, Trish Davis, sent the following open letter to Action For ME:

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:

1. 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.

2. 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.

3. 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.

4. 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. 

5. 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.

6. 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).

7. 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.  

8. 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.

The ‘Toolkit for Professionals’ fails on all 8 counts.

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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?

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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.

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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.

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Trish received the following response from Clare Ogden, Action For ME’s head of communications:

Dear Trish

Many thanks for your email, which I asked my colleague Imogen to pass to me so I could respond on behalf of the charity.

I am hugely grateful to you for taking the time and energy to share your feedback with us, and I understand this would have been a considerable undertaking for you.

The advice we give in the toolkit, published in September 2016, is based on learning from our independently evaluated project which delivered an employment support service to people with M.E. It is designed to provide information, good practice advice, real case examples and practical resources, with the aim of improving the support specialist M.E. clinicians, employment advisers, work coaches and careers guidance practitioners give to people with M.E.

You have very clearly set out your concerns about its content and how this may contribute to misunderstanding about its causes, pathology, perpetuating factors, severity and impact of M.E., and the consequences of these for employment.

You have also asked for the toolkit to be withdrawn, and replaced with a document that spells out the seriousness of M.E. as a disabling illness made worse by activity, and for which setting employment goals, forward planning and rehabilitation are not appropriate strategies.

My team and I have reviewed the toolkit and I do not agree that it should be withdrawn. However, it’s clear that is needs to be updated to ensure it gives clear, accurate, evidence-based information on the severity and impact of M.E., including post-exertional malaise; and the risks associated with ignoring or re-interpreting symptoms, or ‘desensitisation’ or overcoming deconditioning by building up activity.

This update will be included as a priority in our current ongoing content review, which is focusing on the website and also our range of publications.

Your letter will be very useful in feeding into this update, and I would like to thank you again for getting in touch. I understand that this response will be shared on the Science4ME forum.

Many thanks and best wishes

Clare

Clare Ogden
Head of Communications and Engagement
Action for M.E.

Comments on this entry are closed.

  • Dr E Goudsmit 23 January 2019, 10:52 am

    Thanks for your accurate description of pacing. AFME’s current advice online is still based on a psychiatric theory but they refuse to take expert advice. I was there at the beginning of AFME, even edited InterAction for a while, and saw them play politics. I remain loyal to the charity but they need more responsible people to run it so we don’t get nonsense.

    I have the same sinking feeling with regards to this survey being promoted. I was the first to flag up the flaws of PACE and appear the only one still who has noticed the major issues of this survey. I completed and reported a good outcome. But I had the form of CBT they describe; not the type evaluated in the RCTs. And the two are miles apart.

    Charities say it doesn’t matter, but it does. Is everyone sleeping? You can’t interpret findings about CBT if some of us get the good protocol and the others the rubbish one. And they won’t be able to tell us apart.

    This is the science of a 13 year old. Terms are poorly or wrongly defined. APT is not pacing: you defined it well. CBT is poorly defined. If all of us got the medical protocol, a lot would at least feel psychologically better.

    There is no pacing expert on the GDG. So expect lots of plans and schedules a la GET. Wallman et al keeps being listed as GET but if you read it, it’s pacing. (You can do activities, but should stop if you begin to feel unwell).

    I may be too pessimistic but don’t see the changes in the guidelines that pwme need. The expertise isn’t there.

    Hope I’m wrong. And AFME go back to their sensible roots.

  • Wendy Boutilier 23 January 2019, 12:25 pm

    Action for ME has failed miserably when it comes to PWME but I think their careers and bank accounts are robust. Patient Stakeholders really need to start amping up the volume about these chosen organizations who receive gov’t funding but aren’t spending it to increase our quality of life. They tend to use this funding to pay for Professional Public Relations so they can continue lining their pockets.

  • Alison Orr 23 January 2019, 12:39 pm

    Thanks yet again, David, for calling out those who purport to be working in the best interests of PwME.

  • Justin Reilly 23 January 2019, 2:14 pm

    Thank you David for your excellent post on AfMEs problems!

  • Margaret 23 January 2019, 4:42 pm

    As someone who when forced to give up work (2011) due to severity of illness was initially placed in the WRAG group, I can personally relate to the horrors embedded in the toolkit. It was just such measures as planning ahead and goal setting that played a huge part in pushing me from moderate/severe and into the severe category. Thinking back to those days of having to drag myself to appointments that I knew I was too ill to even attend, let alone get any benefit from, fills me with dread and horror at the thought of myself or indeed anyone having to go through that torture ever again.

    I am disgusted that a charity that purports to be working on behalf of a group of people suffering from a debilitating illness like ME can produce such a document that clearly will make them worse. And then send that document to organisations that play such an important role in their ability to have a meaningful future. But then we are talking about Action for ME . . .

    Am I the only person that is horrified at the reply from Clare Ogden to Trish. In particular this part:
    “My team and I have reviewed the toolkit and I do not agree that it should be withdrawn. However, it’s clear that is needs to be updated to ensure it gives clear, accurate, evidence-based information on the severity and impact of M.E., including post-exertional malaise; and the risks associated with ignoring or re-interpreting symptoms, or ‘desensitisation’ or overcoming deconditioning by building up activity. My team and I have reviewed the toolkit and I do not agree that it should be withdrawn. However, it’s clear that is needs to be updated to ensure it gives clear, accurate, evidence-based information on the severity and impact of M.E., including post-exertional malaise; and the risks associated with ignoring or re-interpreting symptoms, or ‘desensitisation’ or overcoming deconditioning by building up activity.”

    Surely to God an organisation that has spent as long as Action for ME has purporting to represent ME patients would have some idea by now about the very symptoms that define the condition and the science behind them. That it takes a patient, albeit an expert patient such as Trish, to point out such issues AFTER the document has been sent, is very worrying indeed.

  • Couch Turnip 23 January 2019, 5:01 pm

    With Action for ME it also seems that the door may be open but the minds are shut. What isn’t reported here is that after years of backing the PACE Trial and Esther Crawley (see below), and showing a disregard (some would say contempt) for patients’ views and welfare, last year Action for ME requested to join the S4ME forum. You have to wonder why a charity would want to join an online patient group, but many members thought that it was good that they were reaching out and that they should respond in kind. Some members were far more sceptical, and it seems that they were right to be. A leopard rarely changes it’s spots (nor a PM her pointy leopard print shoes).
    For years Action for ME backed Esther Crawley’s National Outcomes Database (NOD) project. This involved asking patients around the country to fill in many questionnaires before they ever set foot in their local ME/CFS clinic. Some weren’t asked but were told that they had to complete the questionnaires to attend the clinic. Some patients hadn’t even been diagnosed with ME/CFS at this point. Supposedly this was all part of a ‘service evaluation’ exercise, but clinic letters admitted that the form-filling might be rather burdensome for fatigued patients, and service evaluation isn’t supposed to risk adversely affecting patients. In later years patients were asked intrusive questions about their employment, education, work, sick pay and benefits. Another set of questionnaires was sent out after the patient had attended for some time and some patients even had to pay the return postage.
    So how was all this data used? Crawley and colleagues used it to write journal papers without going through the research ethics approval process. Some of these carried the misleading REC reference number that David Tuller referred to in his blog – Trial By Error: How Bristol Investigators Avoided Ethical Review. In all over 10,000 adult patients and over 1,000 paediatric patients contributed data to the NOD. The database has now closed but, as I understand it, the data is being held for these researchers to use, if and when they choose.
    Some patients may be happy to waste their time and energy engaging with Action for ME whilst waiting for them to change; others are too ill and they simply don’t have time to waste.

  • Dan Wyke 23 January 2019, 6:29 pm

    I’m appalled at the actions of AfME. The document in question is hugely irresponsible, and what’s more, totally unnecessary. Nowhere are ME sufferers saying, give me or benefits assessors more information on returning to work. Liaising with a BPS clinic is at best naive; and at worst a sign they do not have the interests of people with ME at heart.

  • Allison Haynes May 23 January 2019, 6:52 pm

    Thank-you so much for this, David and Trish.
    I’d like to add that M.E. patients & advocates should be aware that “Action For M.E.” is responsible for the creation of the new organization “IAFME” (International Alliance for M.E.).
    IAFME appears to be a PR exercise by Action For ME. They hired as its director Ms. Alexandra Heumber, a person with experience in public health issues, but no experience specifically with M.E..
    In December 2018 IAFME shared in groups online a Position Paper that they had already sent to the WHO (which is where they intend to centre their efforts). This “Position Paper” contained 2 glaring problems : 1. It flatly stated that M.E. is not infectious, and 2. it used the term “M.E.” but contained info & criteria that applied to the more general “SEID” or “ME/CFS”, as defined by the 2015 U.S. IOM report.

    [FYI : The IOM report, which was criticized and roundly rejected in 2015 by Doctors, patients, & advocates, was not even necessary at the time, as the ICC, written by a rigorous team of international M.E. experts, had already existed since 2011. People well-versed in M.E. objected to the name SEID and to many aspects of the IOM report’s contents, including its too-diverse criteria, and its 6-month waiting period which prevents early diagnosis & therefore early advice to rest & not push.
    A letter of objection to the IOM report was signed by 50 international experts. But I digress.]

    My point is that this new org, IAFME, did not have adequate knowledge about the disease M.E., yet saw fit to write to WHO on behalf of the M.E. community.

    Advocates immediately wrote to Ms. Heumber (in Dec./Jan) with concerns about this IAFME Position Paper. She maintained her position that M.E. is not infectious. Advocates discussed this Paper & this Org publicly and in emails & phonecalls with Ms. Heumber, and some people & orgs who had originally signed the Position Paper removed their support.
    Ms. Heumber then stated online that the paper had only been a draft, and not sent to WHO. This blatantly contradicted their original statement that the paper had indeed been sent.
    This org, IAFME, is holding a webinar to introduce & explain their organization, this Thursday Jan. 24. The timing of the webinar (same day as the very important UK Parliament debate) demonstrates a lack of knowledge of current events in the M.E. community. It also potentially reveals a lack of understanding of how ill pwme are, if this org is aware of the UK debate, yet believes that pwme could somehow spend their precious energy on 2 major events in the one month or one week, let alone in one day.

    That is all I’ll say for now, as it is possible that this org may change or adjust its positions and intentions. But it is not currently, and has not yet been, open about its very direct links to Action For M.E..
    The public should be aware that IAFME was created by this org, Action For M.E., which is not acting in the best interests of pwme, as evidenced by the above Virology Blog.
    Thank-you.

  • jimells 24 January 2019, 11:59 am

    In-Action for ME is a classic AstroTurf organization. Like any living organism, its first instinct is survival. But patients are too poor to cover the staff salaries and overhead, so they are grant junkies instead. The most important officer is the grant writer, while grumbling patients are just a hassle. In In-AFME’s view patients should just shut up and do what they are told. The net result is that they will produce whatever the highest bidder will pay for. That’s never gonna be us.

    If patients actually benefit from any of In-AFME’s work, that is purely by happenstance.

  • boolybooly 31 January 2019, 6:40 am

    IMHO David your criticism of Action 4 ME is warranted, in fact holding A4ME to account is long overdue.

    I was first diagnosed with ME in Bristol and received counselling from Westcare which later joined Action for ME. I didnt like facing I had ME because it meant the end of my hopes for a busy career in natural history film production, that is a long story in its own right but Westcare did give appropriate advice for the condition which helped to end my decade long cycles of push and crash.

    Westcare was an example of responsible ME counselling. A4ME has always been political both internally and externally. Since it began to be involved in government decision making it has compromised too much with careerist psychologists irresponsibly promoting BPS bunkum which ignores the reality of ME and illegitimately claims to be a panacea for ME to powers that be, for selfish ends.

    Action for ME needs criticism, to get it back on track. Some involved may not like it but its for the best.