United Kingdom: Sussex & Kent ME/CFS Society News

Posted by Dr. Marc-Alexander Fluks to various fora. Can't find it online, only similar ones including 'thousands' instead of 'hundreds' of patients.

Source: ME Association Winter magazine
Ref: http://www.measussex.org.uk

Thirty years of seeing patients with ME/CFS
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The Sussex & Kent ME/CFS Society marks its 30th anniversary during 2017.
The organisation was founded in 1987 when people got together supported by Hospital Consultant, Dr Keith Hine and Brighton MP, Sir Andrew Bowden. The Society that has helped many hundreds affected by the illness and is now one of the most successful regional ME charities in the UK.

Society patron, the actress Jenny Seagrove, commented: 'Sussex & Kent ME/CFS Society provides absolutely vital support to those people in society who suffer this debilitating and much misunderstood condition.

At last research is being done into ME and also into the plasticity of the brain and nervous system, so perhaps hope will be allowed to shine its light into the darkness of some people's lives.'

Dr Keith Hine commented: 'I was appointed as a Consultant Physician at Cuckfield Hospital in 1984. On my first weekend in Sussex I was asked by our local GP to see a patient with probable 'Myalgic Encephalomyelitis'.

I visited this patient at home and found a fit-looking man who had been pole-axed by a condition of which I had no experience. Clinical examination was normal but here was a genuine patient with extreme fatigue who was unable at times to even get out of bed. I had to agree that this fitted the description of 'ME'.'

'This experience engendered an interest in CFS/ME which has remained with me throughout my consultant career. When central government released a considerable amount of money in to establish regional CFS/ME services, I was involved with Colin Barton and other members of the society in developing this service locally.'

'I retired from the NHS in 2008 but I have continued to see patients privately in the Nuffield Hospital. Since 1984 I have calculated that I have seen well in excess of 1,000 patients with CFS/ME.'

'As a consequence of the Chief Medical Officer's report and subsequently the NICE report, I have seen GP's become more aware of the condition and they have diagnosed and instituted appropriate management earlier. I suspect that this early involvement is the reason that we have seen a reduction in the proportion of patients we would classify as 'severe'.'

'I have now 'hung up my stethescope' and retired completely from clinical work. I am grateful to Colin for his support over the years and I wish the Society a great future.''

 

And there's a big red flag for me. I've seen that jargon commonly used in NLP/self-development areas, and, given where that quote has come from (the Sussex & Kent ME/CFS Society), I don't believe they are using it in any other sense.

 

The previous story from the Sussex cfs society is that it was Professor Anthony Pinching of Barts who encouraged Colin Barton to start a patient Society in the 1980s. With Alistair Miller and Esther Crawley as current Medical advisors to the Society, WHY do the patients of Sussex and Kent keep voting in Colin Barton as Society chair. Anyone in Sussex or Kent have any clues as to why the patients of those counties keep that terrible Society in power?

 

Yes, brain and neuro "plasticity' research should ring loud alarm bells.
Patron Jenny Seagrove is also on record for stating, in a newspaper interview, that 'Some people she knows with ME managed to turn their lives around, but others she knows with ME didnt manage to turn their lives around'.

What nonsense. I do wish well meaning fools would resist meddling, and speaking for patients. Sounds like she is clueless about ICC ME.

 

It's not an elected position, so Colin Barton is not voted in and cannot be voted out.

 

Its a registered charity, with the same 3 trustees from early on. Not too familiar with charity law, but do the members not have voting rights? Does the charity have a Constitution, I wonder?

 

The Sussex Cfs society is a registered charity, not merely called a Society.

That Society does harm to ME patients nationwide, by collaborating with AFME, and previously with AYME, by publicly supporting psychosocial treatments, and by giving Esther Crawley and Alistair Miller credibility, so they can say they have patient support.

Can it really be the case that just one man is dictating all the policy and statements of an ME patient group and charity?

 

I couldn't find anything from a search of the site. They have a 'Contact Us' page where you could ask: http://measussex.org.uk/contact-us/

 

Another Patron is Caroline Lucas (Green Party)...........anyone have green connections?

 

This, http://beta.charitycommission.gov.uk/charity-details/?regid=1082681&subid=0, tells us they have a constitution but it's not available from the Charity Commission.

 

OMG - I've been a member for a long time.

 

Is there a reduction in the numbers of severe patients or just the ones they see? Any evidence?

 

Clinician bias. Research exists partially to correct for such bias, so if "but I see ..." conflicts with "research shows ..." then research wins. And in this case, objective measurements used in research show no improvements from CBT or GET.

It's disgusting that these quacks are being given a platform at the expense of ME patients.

 

I have sent this email to Caroline Lucas:

"Dear Caroline,

I have been a member of the Green Party for a long time - since before I got ME and my two degrees in biological science (the Masters degree was a distinction, obtained before my recent worsening).

I have just been shocked to find that you are a patron of the Sussex & Kent ME/CFS Society.

Please look on the other ME sites, for example the recently set-up site https://www.s4me.info/ (Science for ME), Phoenix Rising and several other sites about ME, and you will hopefully realise that the Sussex & Kent ME/CFS Society does not represent ME properly, and in fact misleads people very badly.

This is an illness which has been misrepresented and under-funded for decades, with the consequence that sufferers are doomed to a life of being disbelieved, mocked, underfunded, etc. Many of us were extremely able before the illness hit.

I am passionately Green, and used to be very active until the disease made it impossible. I therefore hope fervently that you will take this email seriously, and either make urgent enquiries of the Society of which you are a patron, or simply leave, perhaps instead joining one of the more correctly-run organisations.

There is at last a lot of movement within this illness, with America dropping references to the hugely-damaging GET (graded exercise therapy) and the ill-placed CBT (cognitive behavioural therapy), and the UK at last listening to patients and reviewing their guidance properly. (It will take a couple of years.) I would like to see the Green Party at the forefront of this revolution.

Thank you for your time and attention to this important matter.

Yours sincerely"

I'll let you know if I get a reply.

 

I suspect that as the internet has become more widely used and patients found each other online, people have done their homework first and avoided certain docs like the plague.

 

Could be that severe patients in those 2 counties end up avoiding doctors and leaving the Sussex cfs society. That Society also experimented with Lightning Process a few years ago. The clinical lead of the clinic did.

 

One would imagine from that website address measussex.org.uk that the organisation was affiliated to the MEA. Is there any such affiliation?

It is noteworthy that the email address refers to sussexmes.