Trial By Error: Action For ME’s Employment Advice

Andy

Andy

Retired committee member
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.
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http://www.virology.ws/2019/01/23/trial-by-error-action-for-mes-employment-advice/

Also includes @Trish 's letter to AfME about the "Toolkit for professionals".
 
Sometimes alternative spelling is fun. I quite like this 'paraidgm' word :geek:

@dave30th English is not my first language but I think there may be a singular/plural thing going on with the clinical service in this sentence:

"Unfortunately, it is hard to trust much of the information coming out of clinical service that generally adhere to the notions promoted by the GET/CBT ideological brigades."

It might be better with either 'clinical services', or alternatively 'a clinical service which generally adheres'?
 
Andy said:
http://www.virology.ws/2019/01/23/trial-by-error-action-for-mes-employment-advice/

Also includes @Trish 's letter to AfME about the "Toolkit for professionals".
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Andy, this reminds me of something I meant to share. If you look at Fluge and Mella's Rituximab study then I think you'll find that they used activity monitors (I think there are relatively cheap options out there - not sure which option Fluge & Mella used). Anyway; I think readers should challenge any psychological study which doesn't have an objective measure of activity built in.

I'm not too well versed on the politics of ME/CFS. I once accidentally suggested in an email to Action For ME (AFME), and an English Member of the European Parliament, that AFME challenge a British ME/CFS psychological study which used self assessment to assess outcome. AFME were not very happy with my email - we didn't fund it/not our's ---. I realised the error when reviewing some of the material on this site on IAFME/AFME; one of the contributors mentioned that when you're communicating with AFME/IAFME don't mention PACE or SMILE (I barely know what SMILE is).

In short, challenge any psychological study which doesn't have an objective measure of activity built in (e.g. activity monitoring). In particular challenge any journal which publishes a study which uses self assessment to assess outcome.

Oh and as that wiser person wrote; don't mention PACE or SMILE when your communicating with AFME/IAFME --- they won't like it!
 
Thank you David but particularly, thank you Trish for putting the leopard and it's spots firmly back in the box.

Peter's Principle applies to AfMe... me me me; is not this is a case of the "means" meeting the "ends" ?!
Which is organisational survival together with personal career needs etc and charity continuance?
 

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https://www.actionforme.org.uk/living-with-me/managing-work/see-me-project/
This is interesting.......
We developed SEE M.E. in response to this, delivering it in partnership with the specialist M.E. clinic at North Bristol NHS Foundation Trust, Action on Disability and Work UK, Jobcentre Plus, Remploy and Pluss (an award-winning social enterprise). The project was funded by SEE M.E. was funded by the National Lottery through the Big Lottery Fund, the Henry Smith Charity, Lloyds Bank Foundation, Rayne Foundation, Denman Charitable Trust and Dame Violet Wills Trust.

SEE M.E. aimed to support people with M.E. living in Bristol, North Somerset, Gloucestershire and South Gloucester to stay in work, return to work or leave work well. By developing and demonstrating good practices in integrated health and employment support for people with M.E., the project raised aspirations and helped individuals to achieve their goals in relation to employment.
 
https://www.actionforme.org.uk/uploads/me-and-work.pdf




read it and weep NHS Plus, NHS Health and Work (still out there and available to OT's in Occupational Health)

NHS Plus guidelines
In addition to guidelines for GPs and other healthcare professionals involved in
diagnosis and symptom management (see below) the NHS has produced
guidelines for employers and employees.
NHS Plus published
Occupational aspects of the management of chronic
fatigue syndrome: a national guideline
and
Occupational aspects of chronic
fatigue syndrome/myalgic encephalomyelitis: evidence-based guidance for
employers
, in October 2006.
Their leaflet for employers says: “Most people with CFS/M.E. are likely to fall
under the remit of the Disability Discrimination Act 1995” – now contained in
the Equality Act 2010 – “where there is a requirement to make reasonable
adjustments. These may include measures such as: changing locations of work,
working from home, modifying work hours, reducing workloads, reducing
physical tasks, making provision for a wheelchair, flexibility in working patterns.”
NB. Links to NHS Plus guidelines, the National Institute for Health and Clinical
Excellence (NICE) clinical guideline and NHS Scotland’s Good Practice
Statement for healthcare professionals may be found on our website,
www.actionforme.org.uk
 
Trish said:
AfME have withdrew the Toolkit from their website yesterday. They are updating it.
See this thread.
Thank you @dave30th for taking this up. I suspect your intervention made the difference.
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Was it the CDC who removed CBT and GET from their toolkit but failed to tell any of the doctors in the US that they'd done so?

Very disappointing to see this pattern repeating itself.
 
Andy said:
:) Well, if you do ever need somebody to look through a document then let me know, I'm an amateur though at that sort of thing.
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:) me too @dave30th Always happy to unofficially proof read anything when I'm able. Since I've been ill, the slightest errors really shout out at me, i think it's because it's a bit of a struggle & my brain doesn't make up for the errors by 'filling in' in the way it did while i was healthy, so things really stand out. I'd be thrilled for my stupid ME brain to be of benefit to something :D

Barry said:
It can also be potentially very embarrassing, or even risky! I seem to have developed a habit of occasionally typing anagrams, and it is quite a world of discovery. "This" for example. Others I cannot recall at the moment. (Sorry, off topic).
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:laugh::rofl:

Thanks Trish & @dave30th & everyone for this & thanks to @Action for M.E. for listening. I hope the new one will be better & it'd be great if an alert could be sent to the orgs that have already been given the old one (eg & especially DWP!) explaining it's been withdrawn & why.
 
Didn't know where to put this.
It's a firm of lawyers based in Brighton , Sussex
Chronic Fatigue Syndrome, ME and Long COVID in the Workplace – What Should Employers Be Doing?
This October 2023, our Employment Law Team are launching Disability Matters, our third annual campaign to stamp out disability discrimination in the workplace. This year we are concentrating on employees who suffer from Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) and other medical conditions such as Long Covid.

You are disabled under the Equality Act (2010) if you have a physical or mental impairment which has a ‘substantial’ and ‘long-term’ adverse effect on your day to day activities.

The charity Action for ME uses the term ME/CFS in line with the NHS diagnosis but acknowledges that this may be an umbrella term for a number of illnesses. They estimate that a quarter of a million people in the UK are affected by ME/CFS.

In the aftermath of the Coronavirus pandemic, many people have also been diagnosed with Long Covid. The most common symptoms are extreme fatigue, shortness of breath, loss of smell and aching muscles. The Office of National Statistics estimated in January 2023 that approximately two million people were experiencing long COVID symptoms, with 19% of these reporting that these symptoms had greatly limited their ability to undertake day-to-day activities.

Although recent reports suggest that a majority of people with long COVID will recover fully within six months to a year, this still means that a considerable amount of the working population are experiencing chronic long COVID symptoms.

Employers are legally obliged to avoid treating anyone less favourably due to their disability. Sadly, our Employment Law team deal with many cases where an employee has been discriminated against due to chronic fatigue and long COVID .
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We are committed to educating employers about supporting staff with ill health and disabilities By putting CFS/ME and Long Covid at the heart of our campaign we hope to create a greater understanding of these complex conditions so that disability discrimination at work becomes a thing of the past.
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full info Chronic Fatigue Syndrome, ME and Long COVID in the Workplace – What Should Employers Be Doing? | martin searle solicitors (ms-solicitors.co.uk)

how good or bad this is all depends on what information they are using, and where they are getting it from.
Worth remembering that this firm is also in 'Sussex ME society' territory.
 
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