United Kingdom: Sussex & Kent ME/CFS Society News

The Sussex Cfs society is affiliated to AFME, BACME, Esther Crawley, Alistair Miller (medical advisors), and previously to AYME.

As EC and AM are still blatantly in favour of psychosocial and cbt/get, can we assume that the Sussex cfs Society members agree that cbt/get and Oxford criteria are great? Or is it that one person, the chair Colin Barton, is weilding power over 2 uk counties' ME policy?
How can it be that just one chunk of the country has a local ME group that is so out of step with everyone else? Is Sussex and Kent stuck in 1989?
 
Adrian said:
I suspect if there is a change in the perceived number of patients who are severe then its due to patients giving up on doctors. But I've not seen any research showing any evaluation of the effect of the NICE guidelines.
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My aunt is severe ( function around 7-10%). She can' t even get a home visit, or the yearly bloods she is supposed to get. She has POTS symptoms, heavy metal issues (lead), and GP has basically said that there is nothing more to be done for her .....
 
There is another ME society in Sussex

ReMEmber
who have a meeting due in May. Speakers include Dr Amolak Bansal.

Their organisers( Janice and Bill Kent) are part of the Parliamentary group of which CS and the Countess of Mar are members.

They are not in line with Colin Barton.
I am not affiliated to them or a member, just went to a meeting about 2 years ago at which Amolak Bansal and Charles Shepherd were speakers.

Dr Shepherd wrote report of the meeting.


EDIT:http://www.meassociation.org.uk/201...ghlights-of-burgess-hill-meeting-14-may-2016/

Link to the meeting added and spelling checked.
 
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Nancy Blackett said:
Or is it that one person, the chair Colin Barton, is weilding power over 2 uk counties' ME policy?
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As I understand it, CB was strongly involved in helping to get NHS services for ME/CFS in Kent. From the S&K Soc website,
Kent & Medway CFS/ME Service – Dr Mario Vergara-Williamson
...The Society has been instrumental in the development of NHS services and we value their ongoing support enormously.
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Mario Vergara-Williamson is one is the authors of the GETSET paper, as well as the Kent NHS clinic lead Consultant.

For Sussex, according to the website,
Sussex CFS/ME Service Team (NHS)
.... Colin Barton (as lead of the association) takes a keen interest in the Sussex CFS/ME service and shares latest medical research ideas with us.
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I've had a reply from Caroline Lucas.

"Thank you for your email. I am very sorry to hear that you suffer from ME.

I want to support those with ME in the battle to increase understanding of the causes of this debilitating condition. I have been very interested to read articles like this one in the New Scientist, which discusses emerging evidence about likely physical causes: https://www.newscientist.com/article/2121162-metabolic-switch-may-bring-on-chronic-fatigue-syndrome/

On the issue of Graded Exercise Therapy, I am a signatory to Early Day Motion 271. This puts my concerns formally on the Parliamentary record (a copy of the Motion is pasted below):
https://www.parliament.uk/edm/2017-19/271

Early day motion 271 - NICE GUIDELINES ON ME - UK Parliament

www.parliament.uk

That this House welcomes NICE's consultation with patients and their representatives on whether to review its clinical guidelines on Chronic Fatigue...

Early day motion 271

NICE GUIDELINES ON ME
  • Session: 2017-19
  • Date tabled: 06.09.2017
That this House welcomes NICE's consultation with patients and their representatives on whether to review its clinical guidelines on Chronic Fatigue Syndrome/ME (CG53); notes that myalgic encephalomyelitis (ME) is a serious, debilitating, chronic health condition affecting about 250,000 people in the UK, and is concerned that about half of the patients asked in a number of surveys reported adverse effects on their health from Graded Exercise Therapy (GET) which is recommended by NICE; notes recent biomedical research indicating an abnormal physiological response to exercise in ME patients, and that the US Centre for Disease Control no longer recommends GET for ME; notes also the unanimous call from consultation stakeholders, and a petition of 15,180 patients, for NICE to update its guidelines on ME; and urges NICE to review CG53 and to consider patient experience and recent international scientific evidence in its assessment of the merits of GET for treating ME.

I recently raised very similar points of concern with the relevant Minister, who responded and referred to the current NICE review: https://www.nice.org.uk/news/article/nice-to-begin-review-of-its-guidance-on-the-diagnosis-and-treatment-of-cfs-me

I know how important this review is to people suffering from ME and I am keeping an eye on progress. In case you would like it, there is some information on the timescale of the review here: https://www.nice.org.uk/guidance/indevelopment/gid-ng10091

Turning to your concern about the Sussex & Kent ME/CFS Society, it is not clear from your message what your criticisms of the Society are. I am afraid that due to constraints on my time, and the need to prioritise correspondence from constituents, I cannot into detailed further correspondence, but if you want to email me with some detail about your concerns, please feel free to do so. I will carefully read any explanation that you send. In the meantime, I hope the above information reassures you that I know ME can be a devastating condition and I want to do all I can to support those who suffer from it.

Best wishes,

Caroline"

I have an awful lot to read and listen to at present and not enough brainpower to address this right now. Clearly she's not up to date with the situation on Rituximab, but perhaps more importantly, she needs briefing on the Sussex & Kent ME/CFS Society, and perhaps needs to switch allegiance to the one that Charles Shepherd and the Countess of Mar belong to - ReMEmber (thanks @Binkie4). They are here: http://www.remembercfs.org.uk/
 
MeSci said:
switch allegiance to the one that Charles Shepherd
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"Colin is chair of Sussex and Kent M.E. Society, and this year they celebrate their 30th anniversary. You can read the many tributes paid to the charity on its website, including from ME Association chairman, Neil Riley, and patron and MP, Caroline Lucas"

http://www.meassociation.org.uk/201...-from-sussex-kent-m-e-society-25-august-2017/

so it looks as though the MEA back him as well(?)

eta:
you might want to let her read this
https://www.s4me.info/threads/not-a-recommendation-alastair-miller-on-cfs.1685/page-3

eta 2:
http://www.meactionuk.org.uk/dangerous_dominance.htm

"
From: "magnus5006"
To: <MEActionUK@yahoogroups.com>
Sent: Sunday, September 12, 2004 8:40 PM
Subject: [MEActionUK] Imega/AfME`s attempt to control responses to Wessely`s Scotsman propaganda trash

You are calling for an overwhelming storm of protest about Prof Wessely's letter in the Scotsman. Why? the letter does not seem unreasonable but we certainly would appear so if we took that stance. We should be glad that Prof Wessely is now beginning to recognise the true nature of the illness.We must not forget, after all, that he holds a prominent position.

Lets hope that this signals a new future for Kings and the way they deal with ME/CFS patients...

Bye Colin Barton (Listowner of IMEGA-e) http://health.groups.yahoo.com/group/imega-e/

(Please note that IMEGA-e is supported by both Action for ME and the ME Association)

If you wish to send your comments to Colin Barton you can e-mail him here)"


eta3:
I missed the most obvious problem
Esther Crawley is one of their medical advisors
http://measussex.org.uk/about-us/medical-advisors/
 
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Skycloud said:
I can see a difficulty in that Ms Lucas withdrawng support from this group could be percieved as a withdrawing support from pwme. This might be an issue for Lucas and she may see it that way herself
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It seems like a big name dropping opportunity for CB. I find it a bit nauseating personally. I assume that CL must be aware of the stance of CB EC etc. I guess she perhaps sees things in that organisation as a pleasant difference of opinion a bit like some kind of multi faith group or political coalition where everyone works together despite having quite different views. I suspect from that letter it would take evidence of ex/members being unhappy with the way the group is run or approaches promoted (LP anybody) preferably one or more of her constituents to really make her reconsider.

ETA cast iron nailed on those comments were solicited and I wouldn’t be surprised if it wasn’t CB himself doing it....
 
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Both Bob and I were members of the S&K Society a long while back. It's how we met, and how I met a number of other good folk, so it can't all be bad. But Bob and I crossed swords with the "society" over the promotion of the Lightning Therapy, and the bullying that was going on when members didn't toe the line.

There is actually a long and bitter history of how the original group was taken over.

Charities under a certain size do not even have to produce detailed accounts, so we never really found out how the money was spent. You will find that they will not respond to anything much unless you are a paid up member. Someone locally, new to the illness, rang them to find out if there were any support groups in the area. Colin refused to tell them as they weren't members. They paid up, and he told them that there weren't any(most of their groups are in and around Brighton). At the time I was still a member (albeit an unpopular one in certain quarters) and we were running a support group only 5 miles from where they lived. Eventually they found us through other means.
 
adambeyoncelowe said:
I hope you respond to Lucas and that she jumps ship!
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Sorry - I don't seem to have posted my reply:

"Sent: 15 March 2018 19:25
To: LUCAS, Caroline <caroline.lucas.mp@parliament.uk>
Subject: Re: ME and Sussex & Kent ME/CFS Society

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,"

I've since become rather dubious about Neil Harrison, but I think he is one to watch.
 
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