(Not a recommendation) (UK) "Chronic Fatigue Syndrome Conference: Costs, challenges and practice"

[Esther12]

Thanks Clare. Good to get a bit more background. To me it looks like Jessica Bavinton's Vitality 360 is the most worrying organisation involved with this.

I'd be happy to answer any questions you have about the outcomes of the project. For example, we know that 72% of SEE M.E. clients achieved the employment goals they had set for themselves, including achieving their best possible exit from unsustainable employment, achieving more sustainable existing employment, successfully returning to their job after lengthy sickness absence, starting a new job, and starting volunteering or a training course.

My main interest is in why Action for ME are claiming that this intervention helped individuals achieve their goals despite that fact that the project included no control group, and so it's impossible to say if anyone was helped at all. eg your website says:

"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."

Who decided that this claim should be made?

We do not receive funding from the DWP for any of our work at all.

That's good to know. Just to be entirely clear on this, that means that Action for ME didn't receive anything for hosting this training day with the DWP?: https://www.actionforme.org.uk/news/raising-awareness-with-the-department-of-work-and-pensions/

Also, at this training day, were DWP work coaches told that this approach would help people with ME achieve their employment goals? If so, are Action for ME concerned that encouraging this belief could be harmful?

 

[Tia]

@Action for M.E. Thank you for your response.

I echo @Trish 's sentiment here:

I think it is essential that @Action for M.E. make a strongly worded protest about the inclusion of the Chrysalis and Optimum Health Clinic in such a conference. The inclusion of these quack organisations is not just a miscalculation, it is highly unethical and should be protested strongly by Action for ME whose remit is to support the needs of pwME.

I think that it is important to call out these businesses at any opportunity possible. They claim to cure ME, they offer no evidence to back this up and they are staffed by entirely unqualified therapists.

Thanks @Trish.


Our rationale for recommending Paul was that, given the event was confirmed and going ahead, it would benefit those attending to hear from someone who can offer appropriate and useful advice re supporting people with M.E. who have needs around employment, eg. understand M.E. and its impact, work with your client's personal experience, support them support them to identify and pursue achievable goals, with a realistic, longer term approach.

I do take your point that, in doing so, we give the conference agenda a degree of legitimacy, though Chrysalis Effect were added after we recommended Paul. I will get in touch with the organisers to make them aware of our concerns, and would be happy to share S4ME views about the Optimum Health Clinic, if users are happy to set them out here.

Thank you for this, I hope that they take this on board. I have already made some of my views about the OHC clear in the thread above but can share my own experience of them with you if that is helpful?

 

[Action for M.E.]

@Action for M.E. Thank you for your response.

I echo @Trish 's sentiment here:


I think that it is important to call out these businesses at any opportunity possible. They claim to cure ME, they offer no evidence to back this up and they are staffed by entirely unqualified therapists.



Thank you for this, I hope that they take this on board. I have already made some of my views about the OHC clear in the thread above but can share my own experience of them with you if that is helpful?

Yes, that would be helpful - thank you. If you'd prefer to email me I'm on clare@actionforme.org.uk

 

[Tia]

Yes, that would be helpful - thank you. If you'd prefer to email me I'm on clare@actionforme.org.uk

Thank you, I will do.

 

[Barry]

"Science is operating as it should, self-critical and open to revision" ... Oh, that's good ... I must have missed something .

 

[Action for M.E.]

Thanks Clare. Good to get a bit more background. To me it looks like Jessica Bavinton's Vitality 360 is the most worrying organisation involved with this.

My main interest is in why Action for ME are claiming that this intervention helped individuals achieve their goals despite that fact that the project included no control group, and so it's impossible to say if anyone was helped at all. eg your website says:

"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."

Who decided that this claim should be made?

That's good to know. Just to be entirely clear on this, that means that Action for ME didn't receive anything for hosting this training day with the DWP?: https://www.actionforme.org.uk/news/raising-awareness-with-the-department-of-work-and-pensions/

Also, at this training day, were DWP work coaches told that this approach would help people with ME achieve their employment goals? If so, are Action for ME concerned that encouraging this belief could be harmful?

Thanks for your questions @Esther12. The outcomes of this project were self-reported, by the people who took part, many of whom were also self-referred. We don’t know if, without the support of the SEE M.E. project, those that took part would have still achieved their goals of achieving their best possible exit from unsustainable employment, achieving more sustainable existing employment, successfully returning to their job after lengthy sickness absence, starting a new job, or starting volunteering or a training course. The claim that the project “raised aspirations and helped individuals to achieve their goals in relation to employment” is one based on independent evaluation, which collected quantitative and qualitative data from clients, employers, trade unions, clinicians and other partners, before, during and after the project.

For example, clients were asked to complete data capture forms at the start of their engagement with the project and at the end, including specifying two employment goals, and rating on a 0-6 point scale their confidence to achieve their first specified employment goal, and their confidence to achieve their second specified employment goal. They were also asked to rate their understanding/knowledge of employment rights and entitlements, their confidence to access and apply for support and benefits, and the amount of time in the past week in which their enjoyment of life and sense of wellbeing had been compromised by their employment situation. Based on comparison of their scores from the start and end of the project, results show that, as a result of accessing SEE M.E.:

• 72% reported achievement of self-defined employment goals
• 73% reported positive change in current understanding and knowledge of employment rights and entitlements
• 93% reported positive change in their confidence and ability to access and apply for the support and benefits available to them
• 65% reported a positive change in the amount of time their employment situation affected their ability to enjoy life and/overall sense of wellbeing.

With regards to your second question, to be entirely clear, Action for M.E. did not recieve anything for hosting that training day. The training was delivered by Paul Davey, who led our SEE M.E. project, and it focused on how DWP staff can better understand M.E. from their client’s individual perspective, in order to work in a more collaborative way. As we set out very clearly in our toolkit for professionals (including DWP staff), developed as part of the SEE M.E. project: “It is important to understand that the guidance given in this toolkit will not automatically result in your client with M.E. being able to sustain or return to employment.” The toolkit is available on our website at www.actionforme.org.uk/living-with-me/managing-work/see-me-project/ (we ask for contact details of those downloading it so we can track which professionals might be using it). Feedback and comments welcome!

 

[Esther12]

Thanks Clare.

We don’t know if, without the support of the SEE M.E. project, those that took part would have still achieved their goals ...

I think that's an important point, and is why I'm concerned by language like this:

"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."

Is there any way you could change that language, to make it clear that currently we cannot know whether or not the project did help individuals achieve their goals or not. Given some of the current problems we see with the way the DWP treats people with ME I think it's wise to really stick to the evidence when it comes to any claims about whether interventions help people with ME achieve their employment goals.

 

[Action for M.E.]

While we don't know for sure if, without the support of the SEE M.E. project, those that took part would have still raised aspirations and achieved their goals in relation to employment, we don't have any evidence that it wouldn't either!

Instead, we are making a reasonable assumption, based on detailed independent evaluation that was carried out.

The outcome of this evaluation is inherently dependent on the fact that the service offered by the SEE M.E. project was delivered face-to-face, on a one-to-one basis, by experienced advisers who had in-depth knowledge of employment support for people with M.E. and other long-term conditions, and who were embedded in the Bristol NHS service (ie. not working in isolation).

So it's really important to make a clear distinction here between this bespoke service offered by the project, and the resources (ie. the toolkit, plus info booklets for employers, and employees) that were developed as a result. We do not claim that our toolkit can achieve the same result - instead, it's a guide to help professionals understand M.E. better, and support their clients more effectively, taking a client-led approach, and working collaboratively with other professionals involved in that client's care. We have also made this clear in any training delivered as a result of SEE M.E., and will continue to do so.

 

[duncan]

project was delivered face-to-face, on a one-to-one basis, by experienced advisers who had in-depth knowledge of employment support for people with ME

Extraordinary. I doubt there are even 10 of these in the whole of the US, and those 10 are renowned clinician/researchers.

 

[Esther12]

Instead, we are making a reasonable assumption, based on detailed independent evaluation that was carried out.

I don't think that it is reasonable to claim that the project did help individuals achieve their goals. As you say, we cannot know if this is true or not.

There's a fairly long record of positive claims being made about the value of interventions for ME based on preliminary results or poorly controlled studies, while these claims can be supported by independent evaluations and expert groups they keep being debunked when assessed under more rigorously designed studies. These misleading positive claims can lead to resources being misallocated, patients wasting their time and limited energy, and misguided views propagating about the ease with which those with ME can be managed into overcoming some of the difficulties resulting from their ill health.

Who did the independent evaluation? How can they justify the claim about SEE ME helping participants when there was no control group?

I am worried that Action for ME has a cultural bias towards making 'positive' claims and that this can play into the hand of those with a history of making life worse for people with ME. When there are so many people with personal and professional incentives for promoting low standards for the evidence required to make claims about having 'helped' people with ME we really need patient groups to be pushing back, and insisting such claims should be made only when there is good evidence that they are true.

If we do not know whether or not people were helped to achieve their goals by the SEE ME project then Action for ME should not be claiming that they were helped.

 

[Sly Saint]

Re Optimum Health Clinic; anyone got a copy/read this ?
Radical New ME/CFS Report | Free Online Now And Delivered‎

 

[Trish]

Re Optimum Health Clinic; anyone got a copy/read this "
Radical New ME/CFS Report | Free Online Now And Delivered‎
of theirs?

In the interests of information gathering and sharing, I just signed up for and received on line links to the free report which I've now skim read.

The 'theory' is dubious - for example they state that there are 9 subtypes of ME:
Nutritional subtypes: adrenal, immune, digestive, toxicity overload and structural.
Psychological subtypes: helper, achiever, trauma, anxiety.

Their treatment comes in two parts:
Psychological, which they are proud to boast includes aspects of NLP, Reverse therapy and LP (which their leader says he helped to develop). The program of psychological treatment is described as a 90 day program including group and individual sessions.
Nutritional run by nutritionists (I have no idea what their qualifications are) and uses blood tests to help determine what diet and supplements to recommend.

From the hype on their web page:

The Optimum Health Clinic in London, one of the world’s leading clinics specialising in ME and CFS.
Having treated thousands of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome patients in over 35 countries, using our face to face and distant treatment programmes, we have a wealth of experience in treating these conditions in all of their various forms and sub-groups. We take a genuinely integrative view of treatment, combining all of the latest and most effective treatments and for this reason have recently been featured as an example of outstanding practice The Parliamentary Review’s healthcare edition, and we have won one of the UK’s biggest industry awards – CAM Magazine’s “Outstanding Practice Award” sponsored by Biocare.

Not for me.

 

[Sly Saint]

In the interests of information gathering and sharing, I just signed up for and received on line links to the free report which I've now skim read.

The 'theory' is dubious - for example they state that there are 9 subtypes of ME:
Nutritional subtypes: adrenal, immune, digestive, toxicity overload and structural.
Psychological subtypes: helper, achiever, trauma, anxiety.

Their treatment comes in two parts:
Psychological, which they are proud to boast includes aspects of NLP, Reverse therapy and LP (which their leader says he helped to develop). The program of psychological treatment is described as a 90 day program including group and individual sessions.
Nutritional run by nutritionists (I have no idea what their qualifications are) and uses blood tests to help determine what diet and supplements to recommend.

From the hype on their web page:


Not for me.

So in a nutshell it is neither New nor Radical!

 

[Amw66]

So in a nutshell it is neither New nor Radical!

There is nothing that is offered that you could not find on YouTube. But it is in one place, packaged and delivered with a corporate wrap.

If you didn' t have a clue about how stress causes physiological responses, or the importance of diet, this would be useful ( whether it would be cost effective/ offer value for money is another matter)

It does also offer testing that is either difficult to access on NHS, or not available. For gut issues ( SIBO / D Lactate acidosis etc ), there is testing which many GPs/ medics are not up to speed( thinking of Bob here) , but it does depend on your ability to pay for something that should be better understood and available on NHS for those who are symptomatic.

My aunt spent a fortune with OHC - she has deteriorated to bedbound; she can however tell you all about different meditation techniques ......

 

[Skycloud]

To me this seems to be, in effect, a marketing exercise.

 

[Trish]

To me this seems to be, in effect, a marketing exercise.

I'm sure you're right.

This bit from the blurb I quoted above seems particularly worrying from our point of view of getting the UK parliament on our side:

We take a genuinely integrative view of treatment, combining all of the latest and most effective treatments and for this reason have recently been featured as an example of outstanding practice The Parliamentary Review’s healthcare edition,...

OHC are all too good at the publicity, marketing etc and if they are even getting noticed by a Parliamentary body, their unscientific approach could do us a lot of harm.

 

[chrisb]

It sounds as though the Parliamentary Review should not be taken too seriously.

 

[Sly Saint]

unscientific approach

Ah but they have done a 'gold standard' RCT ;

this was the pilot

"Outcome measures Self-reported measures of ME/CFS symptoms, functional ability, multidimensional fatigue and perceived control."
"Conclusions This study provides early evidence that psychological, nutritional and combined techniques for the treatment of ME/CFS may influence symptomatology, fatigue, function and perceived control. However, these results must be viewed with caution as the allocation to groups was not randomised, there was no control group and the study suffered from high drop-out rates."

https://bmjopen.bmj.com/content/2/6/e001079.full

the results of the full trial should be out this year.

eta: this was their justification for the trial
https://qljzo1c6q3g1biv7m1aytyt1-wp...ent/uploads/2015/06/RCT-research-overview.pdf

 

[NelliePledge]

It sounds as though the Parliamentary Review should not be taken too seriously.

mm except it is the in house magasine seen by MPs

 

[chrisb]

mm except it is the in house magasine seen by MPs

That may be so, but are the stories on the internet true that they solicit interest in appearing in the magazine and then make a sales pitch regarding the cost of appearing. The suggestion is of "unethical marketing ploys". Of course it might all be untrue.