United Kingdom: Sussex & Kent ME/CFS Society News

So what the hell is the point of promoting treatments predicated on deconditioning and unhelpful beliefs! How two-faced and hypocritical can you get. If they still want to peddle these ideas then they should rename their society - this clearly shows ME/CFS is not what they are about.

 

A question @Valerie Eliot Smith please, which occurred to me whilst looking in https://www.s4me.info/threads/valerie-eliot-smith-covid-19-nice-and-me-towards-litigation.14984/.

Just to be clear, I have no medical nor legal expertise. Some of the terminology I'm using is probably incorrect therefore, but hopefully gets my point across.

My key issues are:

• Burden of proof of required to demonstrate harms vs burden of proof of required to demonstrate safety.
• Anecdotal evidence of ineffectiveness and harms from patients vs anecdotal evidence of efficacy and safety from the SMES.

My concern is that, in the future, advocates of GET/CBT-a-la-GET (especially SMES) might argue that if we can base evidence of harms on anecdotal evidence (in the form of patient surveys), then it must be equally valid for them to use anecdotal evidence of efficacy and safety, in the form of "clinical experience", and that theirs is based on medical expertise. I don't believe that argument holds water, but would appreciate your input.

As I see it, the burden of proof required to demonstrate adequate safety should be at a much higher threshold than the burden of proof required to demonstrate the potential for harms. I think this is true for something like aircraft safety, where extremely high confidence has to be demonstrated that an aircraft is safe to fly, but a significantly lower confidence threshold required to demonstrate it's potential unsafety and the need for it to be grounded. I see no reason why the same principle should not apply to medical safety.

SMES have clearly stated that ME/CFS is classified as a neurological disorder, which means they simply cannot rely on any supposed evidence from PACE etc, which clearly states is based on the deconditioning and false illness beliefs theory. So instead there have been murmurings from them about "clinical experience" which is effectively anecdotal evidence, but which I see as being prone to all manner of potential biases.

But if we argue that their use of anecdotal evidence is weak and flawed, even though from "experienced clinicians", then they might well seek to argue that our use of anecdotal evidence is equally suspect; why should their anecdotal evidence be unacceptable but our anecdotal evidence valid?

It would be good to have an effective rebuttal to that, and to think about it well beforehand.

 

[my bold]

What they are not aware of it seems is the non-trivial possibility that some of those people's 'continued' serious illness is very possibly due to GET. It would be good to have data to identify whether people have simply 'continued' to have serious illness, or if they have in fact deteriorated. Maybe some in the SMES themselves do not appreciate that some of those pwME who do not improve, or deteriorate, may in fact be that way purely because of GET and/or CBT-a-la-GET.

If you get people to walk through a minefield, possibly without them realising they are doing so, then it is no good crowing about those who get through unharmed if you deliberately ignore those who didn't make it through unscathed.

It would be interesting to know what proportion the 'many' are as a %, compared to a wider group not subjected to GET.

 

Thank you for raising that, Barry. It's a very important point.

All litigation is founded on stories of real life. As such, much of the basis for litigation is anecdotal. This is then often supported by other forms of evidence such as eg. expert/documentary evidence (eg. diaries, emails, financial records etc.).

When it comes to technical specialist areas such as medical evidence, anecdotal evidence is relevant but does not provide so-called "best" evidence as most patients are not medical experts. However, its role in bringing an action is still key to commencing proceedings.

The patient survey would need to be formally produced by a witness (probably by a representative from Forward-ME) as documentary evidence. It then forms part of the case. If the case then went to trial, the judge would assign the appropriate weight to it evidentially. It's not primary evidence in its own right but it is powerful supporting evidence.

As the NICE GDG requested the survey from Forward-ME, this increases the value which should be put on it (despite the fact that NICE appears to have ignored it so far).

In the case of the ME community, the history of neglect, stigma and consequent under-investment in the illness means that there is a severe shortage of expert evidence to support claims surrounding the harms caused by GET. However, this does not mean that anecdotal evidence is simply dismissed. It still forms a fundamental part of the case.

Your concern about claims that the ME community's anecdotal evidence is of little evidential weight is very real. However, with the power balance as it is (ie. the ME community being in an unacceptably weak position through no fault of its own) it still has a vital role to play. We have to use whatever is available to us.

Arguably, in trials such as PACE, subjective reporting is little more than anecdotal evidence.

So - to bring an action against a healthcare provider for prescribing GET, these are some of the initial challenges:

1. A patient/patients who are willing to provide affidavits detailing their treatment and the effects it had on them. This is where diaries are useful (see blog post). Contemporaneous evidence boosts credibility.

2. Patient evidence cannot be anonymous as it will carry very little or no weight. This might be a problem for some people.

3. Finding healthcare professionals who are a) recognised and credible experts b) understand the history/pathology of ME and c) are willing to act on the community's behalf. This is one of the biggest problems, although, as I said in the post, it's not insurmountable.

I'm aware that this only a start in answering your points, Barry. There is more that I could add about standard of proof and rebuttal evidence (ie. your "aircraft safety" point). However, I'm completely out of resources now and I don't think there's much more I can say that would be useful at this point.

Obviously, evidence is something which would have to be carefully considered if any legal action was being contemplated.

 

Many thanks for this.

ETA:

I'd not really thought of it like that but it's very valid.

 

from 'new' list of support groups on MEA website:

https://www.meassociation.org.uk/2009/09/sussex/

@Russell Fleming

 

Sussex ME Society on managing the aftermath of the virus

https://www.gscene.com/news/sussex-me-society-on-managing-the-aftermath-of-the-virus/

is Caroline Lucas not aware that the current NICE guidelines have been deemed 'unfit for purpose' and potentially harmful for years and are being rewritten?

 

I suspect that those in the SMES will be making what might seem a convincing case the NICE guidelines will remain largely unchanged. Let's hope the new NICE guideline doesn't just end up a whitewash.

 

NICE Guidelines – August
By admin On 4th August 2021
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Three of the most respected service providers for ME/CFS services in the UK have resigned from the NICE guidelines committee.

Dr Gabrielle Murphy (London), Joanne Bond-Kendall (Bath) and Dr Mike Beadsworth (Liverpool).

https://measussex.org.uk/nice-guidelines-august-2/

 

That really is a bit of a stretch. "mutually respected within their own little bubble" would have been more accurate.

 

Moved from this thread:
https://www.s4me.info/threads/nice-...ue-17th-august-2021.21897/page-22#post-364633
__________________

Ah, the Sussex and Kent ME/CFS Society, whose Medical Advisers are:

https://measussex.org.uk/about-us/medical-advisors/

Dr Alastair Miller
Professor Esther Crawley
Professor Leslie J Findley
Dr Alan Stewart
Professor Neil Harrison

 

They were stakeholders, too, weren't they?

Genuine question: How many members have they? How many members have the other ME charities/ patient organizations?

 

Are there actually any ME patient members of this organisation, as when I looked over their website all they seemed to offer patients is the occasional coffee morning and Yoga classes? There doesn't seem to be any means where members can engage socially online.

 

How many members have they?


Sussex and Kent ME/CFS Group is a regional group. I have a friend who lives in the Sussex and Kent group area who for at least 6 years has been attempting to extract this information from the group. To date, the management committee has not been willing to divulge this information.


How many members have the other ME charities/ patient organizations?

Not all UK registered ME charities/patient organisations are constituted as membership organisations and most do not publish their membership numbers on their websites or in their annual report and accounts documents.

Three or four years ago, I obtained a figure for AfME membership and also an indication of the membership of the MEA (the latter slightly larger at that time than AfME's) but the correspondence is on my old laptop. I will get back to you when I've located the correspondence.

The 25% ME Group is a national group and used to have around 1000 members but I've no idea what their current membership is.

TYMES Trust is a small org for children and young people.

BRAME is not a membership org.

reMEmber is a membership org by annual subscription but the membership number is unknown.

I don't think the ME Trust is a membership org. Action for ME is currently exploring a merger with (or absorption of) the ME Trust:

https://www.actionforme.org.uk/news/action-for-me-and-me-trust-exploring-a-merger/

 

Coming at this as someone who knows nothing about them, when I viewed their website my conclusion was that they appeared to be set up to give professionals a voice under the guise of a patient group. There are just too many professional advisors listed for this to be a genuine 'patient group'. I mean, in comparison, how many medical advisors does Action for ME have? One thing that is very clear, they are not a 'disabled/patient led organisation'.

 

https://measussex.org.uk/about-us/

"The Sussex & Kent ME/CFS Society is a constituted registered charity (1082681) that was founded in 1987 working with hospital consultant Dr Keith Hine and Brighton MP Sir Andrew Bowden.

The organisation is managed by a small team of volunteers that include the charity’s trustees. The work is shared by the committee and other volunteers including those that run special interest groups.

The charity is a member organisation of a number of local and national committees and working groups including the NHS Kent & Medway CFS/ME Service and the NHS Sussex-wide CFS/ME Service along with the British Association for CFS/ME (BACME) and the UK CFS/ME Research Collaborative.

The organisation has seven honorary patrons. These are Sir Andrew Bowden MBE, Prof Anthony J Pinching, Dr Keith Hine, Mr Russell Grant, Caroline Lucas MP, Miss Jenny Seagrove and Dr Gabrielle Murphy.

Group officers have working relations and easy access to the charity’s advisors Dr Alan Stewart, Prof Esther Crawley, Dr Alastair Miller, Dr Jessica Eccles, Prof Neil Harrison and Prof Leslie Findley."

 

see tag "sussex me society"

 

Why does a regional support group have six medical advisers?

It's all so ridiculous.

Thanks again for your reply, @Dx Revision Watch. Much appreciated.

 

Would it be worth someone in the area contacting the Societies patrons?

I would at least have thought Caroline Lucas would be sympathetic.