United Kingdom: Sussex & Kent ME/CFS Society News

adambeyoncelowe said:
It's good she replied. You reminded me that my MP (Rebecca Long-Bailey, Lab) hasn't responded to a single email in the last 9 months. Even Theresa May's office wrote back to me when I contacted them! As a lifelong Labour voter I might finally jump ship to the Greens!
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My MP (a Tory, after years of LibDems) sometimes replies. Caroline took quite a while, but then I'm not local to her, so she didn't have to reply at all.
 
MeSci said:
My MP (a Tory, after years of LibDems) sometimes replies. Caroline took quite a while, but then I'm not local to her, so she didn't have to reply at all.
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Usually, they won't reply unless you're a constituent or someone official. Councillors can be better (my mum is a local councillor, and constituents seem to prefer her to their local MP, since she does more locally). I'm impressed Caroline Lucas responded at all. It certainly indicates to me that she's on our side and not just going through the motions.
 
adambeyoncelowe said:
Usually, they won't reply unless you're a constituent or someone official. Councillors can be better (my mum is a local councillor, and constituents seem to prefer her to their local MP, since she does more locally). I'm impressed Caroline Lucas responded at all. It certainly indicates to me that she's on our side and not just going through the motions.
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Or just that she wanted to respond to a keen long-term Green?
 
Moved post

From the Sussex ME/CFS Society website archives (from 2016):

(My emphasis)

https://measussex.org.uk/medical-conference-2016/

ME TREATMENT & RESEARCH CONFERENCE 2016

Nearly 150 of us spent a pleasant afternoon at the Brighthelm Centre in Brighton on October 6th where excellent presentations were given on the neurological aspects of ME/CFS, Nutrition and Immunity along with how local services help people accept and manage their illness leading to improvements. We also heard about some very encouraging upcoming research projects that could make a real difference.

Dr Alan Stewart who is clinician at the Sussex-wide CFS/ME Service chaired a most successful meeting where he introduced top neurologist Professor Leslie Findley along with James Shute and Sarah Adelakun from the Sussex Service. Splendid presentations were also given on ‘Exploring the Neural Circuitry of Fatigue in CFS/ME’ and ‘Brain – Body Interactions’ by Dr Mahinda Yogarajah and Dr Jessica Eccles* who are both to be carrying out important new studies investigating ME/CFS.

Attending also were Prof Colin Smith, Professor of Functional Genomics who is a member of the MEGA Project, Dr Mario Vergara-Williamson of the Kent & Medway CFS/ME Service, Dr Paul Worthley of Burrswood Hospital along with representatives of BACME, AYME, ME Trust, Lightning Process, Brighton Young Peoples Service and a number of other professionals.

This is good example of the NHS and the voluntary sector working together for the good of those affected by ME/CFS.

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Dr Jessica Eccles:
Developing a new targeted treatment for people living with anxiety and hypermobility
https://www.mqmentalhealth.org/research/profiles/new-anxiety-treatment-hypermobility

https://www.researchgate.net/profile/Jessica_Eccles
 
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Merged thread

Help for children with ME – December
upload_2020-1-25_12-44-26.jpegThe Sussex & Kent ME/CFS Society has welcomed a new UK-wide specialist service that can accept referrals from our region and liaise with the NHS Children and Young people’s ME/CFS Service based at Brighton General Hospital that assists in the management of children affected by the debilitating illness. The Bristol based specialist multidisciplinary treatment service can provide assessment, diagnosis and treatment programs for children and young people with severe ME/CFS anywhere in the UK and is headed by the charity’s pediatric advisor Professor Esther Crawley.
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https://measussex.org.uk/help-for-children-with-me-december/

eta: from JAn 2020
Fortunately, The Sussex & Kent ME/CFS Society has seen a large number of its members obtaining a timely definitive diagnosis and receiving the best attention available. This has led to people making significant improvements with some able to move on to lead active lives. Regrettably, we are also aware of many that have been less fortunate and continue to be seriously ill and virtually housebound and in need of care.

It is indeed welcome that we have good NHS specialist adult services locally that have very experienced therapists working with clinicians Dr Alan Stewart and Dr Mario Vergara-Williamson. The Brighton based NHS Children and Young people’s service is also helping youngsters and their families. Other approaches such as Yoga classes and the Lightning Process have helped a good many as well.
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https://measussex.org.uk/year-change-january/
 
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Regrettably, we are also aware of many that have been less fortunate and continue to be seriously ill and virtually housebound and in need of care.
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Continue to be seriously ill? I wonder just how many of those "many" end up a lot worse than they otherwise might have been, were it not for treatments administered?
 
Sussex & Kent ME/CFS Society said:
Although NICE guidelines and the PACE trial remain contentious amongst some patient groups there is absolutely no doubt in my mind that the current approaches of cognitive behavior therapy (CBT) and Graded Exercise Therapy (GET) have helped and continue to help a large number of people to recover from the condition.
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Who needs enemies when we have charities like this speaking for us?
 
DigitalDrifter said:
Who needs enemies when we have charities like this speaking for us?
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By admin On 13th April 2017
| No Comments
Journal of Health Psychology 10/4/17 – The continued critiques of the PACE trial highlight how differing beliefs about the causes of chronic fatigue syndrome still influence how scientific studies in this area are accepted and evaluated. Causal beliefs about chronic fatigue syndrome and a modern version of Cartesian dualism are important in understanding the reaction to the PACE trial. The continued debate on the PACE trial seems to miss the fact that science is incremental. An unfortunate outcome of the PACE controversy and intimidation of researchers may be less research in the area. It is time to move on from criticism and collect more data on effective treatments.
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But the only 'research' they seem to highlight is whatever it is they are doing at Sussex Uni.

this page on their site of congratulations is revealing:
https://measussex.org.uk/about-us/30-years-plus/

ME Association (UK) – Neil Riley

The ME Association is delighted to send its best wishes and many congratulations to Sussex and Kent ME Society on its anniversary. Starting from just a few members, the hard work of its committee has built the Society into an organisation that has helped thousands of people in Southern England who over the years who have suffered from ME. Colin Barton and his team put in long hours and huge effort to bring relief to ME patients and to get across the message to the public that this illness is a truly life changing one. They have worked tirelessly to help in a practical way, looking for treatments that may help. They have campaigned for medical services for people with ME and have formed a close working relationship with service providers in their region. I have known Colin for many years. He and the team behind Sussex and Kent ME Society can be rightly proud of what they have done. Like all the charities devoted to people with ME, it is the passion and the work of the individuals and their supporters within those charities that make the difference. Well done to you all in Sussex and Kent.
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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.
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Dr Gabrielle Murphy
It is an honour to be associated with the Sussex and Kent ME/CFS Society. It has a robust history of service to the membership in a climate where ME/CFS has been regarded as a Cinderella illness. Thankfully much has changed in the last few years, with the activity of such a society playing a significant role in that change, both at central and local levels. In cost sensitive times an illness without an identifiable cause will always prey to the first cutbacks and the work of the society will increase, and be an ever more important voice for specialist service provision and funding, and not least a haven of hope for those affected by the illness. Congratulations on your journey so far, and strength for the next leg.
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Action for ME
I am delighted to see that the Sussex and Kent ME/CFS Society is the same age as Action for M.E. and that both organisations celebrate their birthdays this year. My warmest congratulations to Colin and all members of the Society on this memorable occasion. Local groups play a crucial role in providing face to face support and encouragement to people with M.E. and in engaging with local service providers. This is very evident in the achievements of your group. I congratulate you on all your fine work to date and wish you every success as you embark on your next quarter century.
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Those congratulations are the type of stuff we used to get at my work for the staff website when I worked in HR. we used to ask senior management in our organisation to give us quotes we could use in support of our projects. I don’t think they are all unsolicited.
 
ME Association (UK) – Neil Riley

The ME Association is delighted to send its best wishes and many congratulations to Sussex and Kent ME Society on its anniversary. Starting from just a few members, the hard work of its committee has built the Society into an organisation that has helped thousands of people in Southern England who over the years who have suffered from ME. Colin Barton and his team put in long hours and huge effort to bring relief to ME patients and to get across the message to the public that this illness is a truly life changing one. They have worked tirelessly to help in a practical way, looking for treatments that may help. They have campaigned for medical services for people with ME and have formed a close working relationship with service providers in their region. I have known Colin for many years. He and the team behind Sussex and Kent ME Society can be rightly proud of what they have done. Like all the charities devoted to people with ME, it is the passion and the work of the individuals and their supporters within those charities that make the difference. Well done to you all in Sussex and Kent.
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Sorry, but FFS!

But if memory serves, Neil was never a member of Barton's notorious IMEGA-e Yahoo Group, which inter alia, was allowed to be used for the doxing of an individual's home address.
 
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ladycatlover said:
I'm horrified that Caroline Lucas is supporting them. I've sent OH the link to the stuff above, and he says he'll help me write a letter to her. She's not my MP, but she's the only Member of Parliament of the Party that I'm a member of.
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I think @MeSci tried writing to her once before and got a brush off.

Edit - which isn't to say it isn't worth writing another.
 
Invisible Woman said:
I think @MeSci tried writing to her once before and got a brush off.

Edit - which isn't to say it isn't worth writing another.
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This is what I wrote:

"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"

ref https://www.s4me.info/threads/more-from-sussex-kent-me-cfs-society-date-unknown.1906/#post-33304

I posted her reply on the same thread,

and then I wrote:

"Dear Caroline,

Sorry for the delay, but my brain hasn't been working very well!

The first article is quite good, but the rituximab study sadly didn't succeed. It may be promising for a minority of patients (maybe 30%).

I'm glad that you signed EDM 271.

I'm aware of the review of the NICE Guidance, and am pleased that you are keeping an eye on it. So am I, but we need to be very vigilant. We thought that the last review would produce valid results, but sadly it didn't.

My criticism of the Sussex & Kent ME/CFS Society is based among other things on the influence of advisors such as Professor Esther Crawley (info about her can be found in numerous places) and Dr Alastair Miller (See for example https://www.s4me.info/threads/not-a-recommendation-alastair-miller-on-cfs.1685/).

NB Jonathan Edwards, who says "Competent researchers in ME/CFS have no problem at all with patient 'activists', who value good quality research. It is not in fact that well meaning and dedicated researchers have problems with 'activists' but rather that self-promoting researchers have a problem with patients and academics such as myself calling them out for shoddy work" is a highly-qualified retired doctor and academic.

Dr Neil Harrison appears to be OK: https://www.s4me.info/threads/cmrc-...-the-board-of-the-cmrc.2809/page-8#post-50903

See also http://www.independent.co.uk/news/l...chronic-fatigue-illness-disease-a8133616.html

I hope this is clear - please let me know if anything needs clarifying. I can't promise to reply quickly - ME has taken its toll on my brain after 23 years. It may be mendable!

Yours sincerely,"

The quotes are both from this site. Sorry I can't engage more at present. The messages are all in the same thread, I think.
 
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Sussex ME Society call for NHS services to be further developed
The Sussex ME Society is calling for specialist NHS services for those affected by chronic fatigue syndrome (CFS), known as ME, to be further developed.

Brighton Pavilion MP and Patron to the Sussex ME Society, Caroline Lucas recently asked the Secretary of State for Health and Social Care, Matt Hancock, if they will take steps to expand NHS specialist services for those affected by ME or CFS in Sussex.

Caroline received a reply stating that services for people with CFS are commissioned by local clinical commissioning groups (CCGs). It is the responsibility of the local NHS commissioners to ensure NHS services are commissioned to meet local needs, including for specialist CFS care, taking into account best practice guidance, such as that produced by the National Institute for Health and Care Excellence (NICE).
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https://www.gscene.com/news/sussex-me-society-call-for-nhs-services-to-be-further-developed/

I really wish someone (Carol Monaghan?) would put Caroline Lucas straight on the SMES.

I am also at a loss as to how the members continue to support Colin Barton and CBT/GET.
 
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