United Kingdom: Sussex & Kent ME/CFS Society News

As a long-term member of the Green Party, it is to my eternal shame that our only MP is a member of the group. I have written to her about it before.

 

Yes, I understand. But I like to go to the original source first, so I can look at it as neutrally as possible to start with. I am aware that PWME have concerns about this organisation, but it's never been a priority for me to spend any time on them until now.

 

Are any of the other 'patient charities' member organisations of BACME?

 

I've just spoken to the person who has been trying to establish how many members the Sussex and Kent Group has and she says she's been requesting this information for at least six years.

 

Can't recall any others OTTOMH, but the children's org AYME (now absorbed into Action for ME) were close to BACME and were involved in the annual BACME conferences. (But then AYME's medical adviser was also Prof Esther Crawley.)


AYME was also a supporter of the Sussex and Kent Group:

https://measussex.org.uk/about-us/30-years-plus/

"AYME – Mary-Jane Willows
The Association of Young People with ME is delighted to congratulate everyone at the Sussex & Kent ME Society on your anniversary. The Society has built up a commendable record of providing support to those whose lives are shattered by this condition. The Society has also built a highly regarded reputation for campaigning on behalf of those living with ME/CFS and for its members to receive the appropriate provision of health and welfare support they are entitled to and for promoting the need for more research. AYME is proud to stand beside the Society and its enviable record for its and for relentless awareness raising in the Sussex and Kent area, making life with ME/CFS more understood by the general public and professionals. Sadly there is still a great deal to be done and the role of the Sussex & Kent ME/CFS Society remains profoundly important. AYME will continue to work alongside you in the journey towards achieving proper recognition and diagnosis of the condition, sensitive and supportive treatment in health, education and social care and extensive research and development into useful therapies for all those affected."

 

eg
https://www.s4me.info/threads/susse...promotes-esther-crawleys-clinic-and-lp.13332/

 

Well if it isn't clear now that the group are 'on the wrong side' given that their chief medical adviser Alistair Miller is one of the key spokespersons on preventing the publication of the new guidelines.
The new guidelines that are supported by all the main charities, and the majority of patients.

eta: given recent events maybe all the ME charities need to question their continued support of the Sussex & Kent ME/CFS Society

 

You'd think that Caroline Lucas, being a GP, would have more leverage.

But then again, the head(s?) of the GP service don't exactly help.

 

I'm also surprised to see Professor Pinching listed as a patron. I recall him being very helpful to ME sufferers before, and he was extremely attentive and patient with me when I went for a diagnosis. As far as I know he has always been supportive of sufferers and very intelligent.

Maybe he doesn't know he's listed?

 

I very much doubt he did not consent to having his name listed as a patron.

 

https://www.theargus.co.uk/news/5121105.patient-wait-for-me-clinic/

21st November 2002
Patient wait for ME clinic

(...)



Colin [Barton, Sussex and Kent ME Society] was a member of the working party that drew up the report, published in January this year, which said there was an urgent need for support services in Sussex.

Clare Taylor, newly-appointed development officer for the society, said once the clinic is given the go-ahead, savings made in patients being referred to London, in earlier diagnosis and in benefits, would be considerable.

The Sussex ME/CFS Society was founded in 1989 with 100 members. Two years ago it became a registered charity and now has 800 members.

Until recently it was run purely on a voluntary basis, largely by members who were already struggling against chronic fatigue.

But earlier this year the charity won a £125,000 lottery grant, enabling them to employ a development officer.

Nationally and locally, everyone agrees there should be a clinic.

Professor Anthony Pinching, who heads the specialist CFS unit at St Bartholomew's Hospital, London, believes patients would be best served by a multi-disciplinary service in Sussex and has offered to help train a specialist.

He said: "Detailed plans have been developed to set this up but they appear to have got stuck in the NHS reorganisation..."

------------------------------------

So in late 2002, the Sussex ME/CFS Society had 800 members. But that was nearly 20 years ago.

 

https://meagenda.wordpress.com/2009/06/13/rime-sussex-services-june-2009/

RiME: Sussex Services June 2009


(...)

Link to Barts

The CNCC for the Sussex Wide CFS/ME Service is Barts, London. The minutes of a West Sussex PCT Meeting 24/5/07 say:

… The Sussex MTD will be linked to Barts’ who will provide consultation and training support in its role as CNCC. The support provided by the CNCC will be mainly in terms of education and advice to the Local Multi Disciplinary Team, in order to enable patients to receive their care locally. The Barts’ CNCC will also offer one-off consultation on more complex cases where this is appropriate…

Ed. the Barts CNCC has been condemned by ME patients in London (see www.rime.me.uk – Clinics, London file).

(...)

Brighton 2009

… The Sussex ME/CFS Society did not win my heart and mind in the years I was a member. I left after a few years in sheer frustration as the officials did not seem to be speaking about the disease I live with – yet they assured me that they were representing people with ME; they then went ahead and accepted CBT/GET ‘management’ for local NHS services. The actual ME patients didn’t have any say in the matter. It now turns out the Kent and Sussex ME/CFS Society is also involved in a pilot trial of the Lightning Process…. Lightning is an unproven NLP process that puts the onus on the patients by claiming that if the sick patients doesn’t recover its because they didn’t ”do the work”…

The Chronic Fatigue Society, also called reMEmber, say they were closely involved in the planning stage of the Sussex CFS CBT/GET services. reMEmber seem to put their resources into running self-management courses which they say are open to all people suffering from ‘chronic fatigue’….

I would like representation by a patient charity that is compatible with the multisystem organic seriousness of Canadian Definition ME.

The referral criteria for the Sussex CFS Services relies too much on vague fatigue and does not mention the WHO ICD G93.3 classification of Myalgic Encephalomyelitis or the Canadian Definition of ME…. what do so called “illness beliefs” have to do with ME?…

(...)

Eastbourne Letter to APPG Chair 2005

… People I know with ME do not support the NHS ‘CFS/ME’ clinics which are currently being set up around the country and which offer psychiatric/psychological models of treatment. Someone with ME who attended the Maidstone CBT clinic claims that they were subjected to a lecture by a psychologist who talked about issues such as low self-esteem, negative thoughts, abnormal illness beliefs… They didn’t return. And I think these clinics will be generally boycotted by ME patients. People with other conditions, though, that would fit a loose CFS definition will probably attend and some of these might benefit > skewed results.

…. the number of people with ME who subscribe to the Sussex/Kent Group would be a small minority… in both counties. Those I know with ME want nothing to do with this Group.

Continuing on the issue of fairness, you (APPG Chair) have invited Prof. Pinching to address the APPG next Tuesday re. the NHS Clinics. He will most probably tell the attendees that everything is going swimmingly well. Have you also invited a party or parties who will put the other side of the coin eg RiME, the 25% Group… or someone from a local Group who opposes the new ‘CFS/ME’ unit in their area eg the neighbouring Winchester + Eastleigh Group…

(...)

2009

… having discussed the Clinics with ME friends in Brighton and Haywards Heath (who sent me the description of the Haywards Heath service), I certainly wouldn’t attend such clinics. What has this got to do with G93.3 ME? That the Sussex/Kent Group is supporting the ‘CFS/ME’ services begs questions as to who that Group actually represents? The same question, it would seem, could be asked of the Chronic Fatigue Society based in Sussex, also known as reMember? x,y was a member of the CMO’s Working Group and supported its 2002 Report. Their courses which last two-and-a-half hours, include ‘drawing up action plans, setting goals, problem solving and decision making…. ‘ (x,y 2003). If the courses are ‘tremendously successful’, one wonders who attends, exactly?

I have no faith in the APPG Inquiry Panel which will be assessing the clinics. If they go to providers such as the Sussex Clinics, I suspect the response will be skewed and misleading in that they are most probably attracting patients with a range of conditions, some of which might respond to psychiatric/psychological models of treatment. And if they go to the Sussex/Kent Group, it would appear they will get a favorable response…

Leader of Sussex and Kent ME/CFS Society, InterAction Christmas 2008:

… we have noticed in our area.. that more people with ME/CFS these days are falling into the mild to moderate category and improving with the help of various approaches more quickly than previously.

As more professionals are recognising the illness sooner and administering symptom control along with sensible management advice, less people seem likely to slip into the chronic more severe illness.

In areas such as ours where there are specialist NHS Services, people are being diagnosed sooner and more GPs giving good early advice…

We are starting to see with ME/CFS… that it makes sense to intervene earlier rather than later to prevent chronicity and severity of illness.

Whilst aware… that the situation is far from perfect, things are improving and it’s great to see more of our members moving on and being able to take up active lives again.​

————————

Ed. – Sussex could be a litmus test to see from whom exactly the Inquiry Panel takes evidence and to whom it listens. If it was to exclusively or largely consider evidence from the NHS Service Providers in Sussex and the Sussex and Kent ME/CFS Society, then it would lay itself open to accusations of bias and stacking the deck.

There would appear to be similar concerns in other areas.

Report compiled by Paul Davis www.rime.me.uk

 

Charity Register shows limited financial activity in recent years: https://www.s4me.info/threads/sussex-kent-me-cfs-society.1906/page-4#post-365194 down to £6.4k in 2019, up to £15k in 2020. It only reports as small Charity so only gives a limited report of its activities.

Current Trustee Chair is Colin Barton has M.E - transcript of a radio interview here in which he participated: https://meassociation.org.uk/2017/0...-from-sussex-kent-m-e-society-25-august-2017/

Another Trustee, David Butler was an assistant Secretary of the MEA in the late 1990s.

 

Organisations registered as charities with the Charity Commission that are constituted as membership organisations are not obliged to include their membership figures in their annual report and accounts, or annual updates (where income is less than £10,000).

It is sometimes possible to estimate membership figures where accounts show a figure for annual income from subscriptions and where the subscription fee is known (though this can be complicated where there are various tiers of membership).

 

https://www.reuters.com/article/us-science-social-media-specialreport-idUSKBN1QU1EI

Reuters MARCH 13, 2019

'Special Report: Online Activists are silencing us Scientists say"
By Kate Kelland

'. . .Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life. He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers. They face accusations that they were never ill in the first place; that their condition was misdiagnosed; and that their recovery is therefore fake, he said. As a result, he said, many recovering or recovered CFS/ME patients feel forced to withdraw from the debate.'

 

"Colin: Well it can hit anybody, definitely. It's likely to show up more with people who are particularly active and professional and such-like and high-achievers – it obviously shows up more then with more active people; but in actual fact it does affect people of all types."

 

Thanks again, Dx Revision Watch.

I wonder how that number relates to the patient population of the region and the members of other charities?

Given that not every pwME and carer living in that region will be members of that charity, but of another or none, how do the numbers add up?

I guess they won't say how many of there members are health care staff rather than patients and their families?

I also wonder if it is worth highlighting that their Patron Russell Grant is an astrologer?

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

How can any reasonable person take this society an its medical advisers seriously?

 

Well, the group was founded with 100 members in 1989.
By November 2002, the membership was said to have risen to 800.
At that point, I don't know whether the Sussex group also included Kent or what the population of the Sussex and Kent area would have been in 2002.

We don't know what the current membership is for a catchment area of Sussex and Kent. So until the group is prepared to divulge the current membership, we can't estimate how the current membership figure relates to the population of Sussex and the population of that area of Kent for whom it would be practical to attend meetings, social events and medical conferences in Brighton. (And it's not known what percentage of the population in Sussex and Kent have ME, CFS.)

So I really couldn't offer any meaningful estimate around current membership.

With Russell Grant as a Patron and Leslie J Findley, Miller and Crawley among their medical advisers I don't know how anyone would take this society seriously. Plus the society was involved in a pilot study on Lighting Process. (If my memory serves, this was a proposed project of Prof Leslie Findley's but got put on the back burner or the results were never published - but I'm happy to be corrected. There may be some info about this pilot LP study on my ME agenda site; I won't have time to look today, but here is Findley talking on You and Yours about the Lightning Process.)*


*https://www.bbc.co.uk/radio4/youandyours/transcripts_2007_31_mon_02.shtml

You and Yours - Transcript
BBC Radio 4
TX: 30.07.07 – ME: The Lightning Process

PRESENTER: PETER WHITE

(NB: This was not Prof PD White, but the BBC's Peter White who reported on disability issues.)

(...)

WHITE
Okay, we're not going to talk exclusively about the Lightning Process because there are lots of other things to say but this could be quite puzzling for the audience, for example. Also with us is Gerri De Vries, who's a practitioner for the Lightning Process. Gerri, I mean it does not emerge from that and perhaps it couldn't from a documentary how it works, what can you tell us about how or why it works?

VRIES
Well what I'll say firstly is the context for it. It's a three day training programme and what it allows people to do is make some very powerful changes in their life and health. It's been designed by an osteopath - Phil Parker - and he then has gone on to train other practitioners.

WHITE
But what does it do? If I had a treatment for a medical illness people will tell me what medicines I'm taking, if I'm curious enough to ask - what effects they will have, how long I need to take them. What can you tell me about what happens in this process?

VRIES
Well what I would say about it again is it's a three day training programme, so part of Phil's background, apart from osteopathy, is an NLP in life coaching - that's a component but not all of it. It's very important to know that it does really require people to put in place what they've learnt to make it effective for themselves and they need to be ready to do that kind of work.

WHITE
So are we actually talking about a treatment which is, to some extent, self motivating?

VRIES
I'm glad you asked that question because I want to make it very plain that it's not implied that it's a psychological illness in any way. However, it does require people to be ready to do the work, as they would for any other programme such as CBT or lifestyle management or learning French, for that matter.

WHITE
CBT, sorry jargon?

VRIES
Yes thank you. Cognitive behavioural therapy, which is another approach.

WHITE
I want to bring in Professor Findley, if people came to you how would you describe this treatment and would you advise it?

FINDLEY
Yes I think what Gerri says is absolutely correct - if some people are ready for it, I wouldn't advise it across the board for everyone. What you have to do - every patient with this condition is an individual and he has to - he or she has to be analysed and we treat the condition by treating those factors which are perpetuating the illness in that person. And there are some factors which the Lightning Process and similar procedures will influence and influence for the better.

WHITE
Right but who will it help? We've had this e-mail from Isabel Bennett, it says: I did it last September, made some progress but then relapsed very severely in March and have been virtually housebound since then.

FINDLEY
Well who will it help? It will help those who are ready to receive it. It will help those whose subconscious or conscious stress responses are perpetuating the illness. Now ...

(...)

WHITE
It does sound as though it's very hard to define exactly what this is. I need to ask Professor Findley about what other treatments are available and other processes because actually although we didn't actually hear about all that many in the programme because Leo didn't - on the whole he had two doctors dealing with mind and body but we didn't hear about other processes, what's available?

FINDLEY
Well can I just say that you're asking the question when and why and how should we use the Lightning Process, the answer is we don't know, the research has not been done, there have been no controlled clinical trials.

WHITE
Does that mean we don't know why it works?

FINDLEY
Well there are many things in medicine we don't know why they work but we still use them. The fact is that we're just doing pilot studies, we're at the very beginning of exploring this form of treatment. But this is one of many treatments. People with chronic fatigue syndrome, ME, are manageable, they can be treated and what you do is look for the symptoms which are perpetuating that illness. It may be pain, it may be sleep disturbances, it may be auto-psychological states, it may be allergies. Now on a 10 minute programme it's impossible to go through every single treatment which is used for individuals because this is a huge area of medical dysfunction. But you treat that person as an individual, looking for the factors which are perpetuating in there.

(...)

 

Kent and Sussex have a total population circa 4 million, which if we take 250,000 as the UK patient number, would give a pro rata of around 15,000 patients in K&S. Compared to the MEA and AfME which have perhaps 4,000 members/subscribers/supporters each, 800 members would be favourable, at around 3 times the rate the National orgs are managing.

However without knowing the recruitment policies, subscription costs or member representation arrangements it's difficult to make much sense of what the organisation is about.

 

note this is not the only ME support group in Sussex

@Graham runs one (East Sussex)
and there are a couple of others in Sussex as well I think.
Kent, I have no idea.