United Kingdom: Sussex & Kent ME/CFS Society News

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!

 

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.

 

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.

 

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.

-------------------
​

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

 

Merged thread

Help for children with ME – December

https://measussex.org.uk/help-for-children-with-me-december/

eta: from JAn 2020

https://measussex.org.uk/year-change-january/

 

Well, that's no surprise, at least to me.

 

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?

 

Who needs enemies when we have charities like this speaking for us?

 

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/

 

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.

 

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.

 

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.

 

Did those MP's attend the Parliamentary Group meeting?

 

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.

 

Quite. He wrote this piece, which we discussed:

https://www.s4me.info/threads/me-association-magazine-summer-2019.10788/#post-191812

He popped into the forum and made one post, but didn't really engage with criticisms of his article, for example a few points I raised here:

https://www.s4me.info/threads/me-association-magazine-summer-2019.10788/page-3#post-193330

which to date remain without benefit of a response.

 

Sussex ME Society call for NHS services to be further developed

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.

 

Certain members on here have taken the time to write polite letters explaining the issue. She doesn't seem interested in hearing it, or concerned that she is asking for things a majority of ME patients might not want - apart from Colin & his cronies.