United Kingdom: Sussex & Kent ME/CFS Society News

Thanks for this, CRG.

When I was last given a figure for AfME and the MEA (around 3 years ago) it was more like 5000. I've said I'll check the figures when I next boot my old laptop.

 

From 2009:

http://www.measussex.org.uk/Latest-News/

Tunbridge Wells in May

The Sussex & Kent ME/CFS Society is staging a special meeting at the Christ Church Centre in Tunbridge Wells on May 2nd with a variety of interesting presentations.

Speaking during the afternoon will be Association for Young People with ME(AYME) founder, Jill Moss author of Ray of Hope and Dr Sophia Clark who has an Integrated medical clinic in Tunbridge Wells treating ME/CFS.

Lightning Process practitioner Linda Morgan will be there and Jo Eadie will be running a Laughter with ME workshop.
Ring 01273 674828 for information

 

Will the laughter be directed at the Lightning Process practitioner ...or the organisers?

 

Actually the Sussex and Kent ME/CFS society was running before Colin Barton took over, and I gather there was some unpleasantness. Certainly neither Barton nor the society is very open about how it runs, and does not like to be challenged. Bob and I did try to find out how the subscription money was spent, but got nowhere. There is no voting for chairman or treasurer.

Several of us were very opposed to the promotion of the Lightning Process: that didn't go down well.

There was an online forum, but people were only allowed to talk about ME, so Bob set up a "sister" forum for general chatter. This was resented and "infiltrated" under a false name, so that false rumours could be spread back to the main forum. A key incendiary point was that I had been making homophobic remarks: a stupid accusation, given that a number of our members were gay (including Bob). Bob tracked down the infiltrator, identified and removed him, and that stopped, but he decided not to make an issue of it.

There were a number of local support groups in the area, mostly along the coast. If the person running it was a member of the S&K, it was claimed as one of theirs. I set up the Crowborough group independently and listed it with the MEA and AfME. Checking later on, I found the listing in AfME had been removed. Barton had contacted AfME and told them that our group fell under their responsibility, and so did not need to be listed separately.

I quit the group, and the Crowborough group is still running, under the magic hands of our Simon.

There are very few ME/CFS groups in the wider area, especially inland, which is why we get enquiries from further afield. I think we have about 30 names on our books at present. Simon runs weekly Zoom meetings (thanks to covid), and we are trying to work out what to do now that restrictions have been lifted.

 

Thanks for your insights, Graham.

I used to view the "IMEGA-e" Yahoo Group that Barton and a colleague ran and recall it being a pretty toxic platform - especially towards posters who sought to discuss the politics surrounding ME or who expressed criticism of certain national charities.

This is why Connie Nelson set up Local-ME on Yahoo for local ME group reps and selected individuals.

 

What a cheek! I think I would have complained to the CC.

 

There is something dreadfully fishy about it all.

You can see why "colonic lavage", by Royal appointment was a favoured treatment of AfME members in those early days. Allegedly.

 

I remember IMEGA-e list too. Barton shut it down without warning in a fit of pique. Sadly I've forgotten what it was over now! I met up with somebody from the Other Sussex Group while demonstrating outside Dept of Health on Int ME Day years ago (when we still did that!). I'm sorry, but I can't remember her name now. She was at great pains to point out she was nothing to do with CBs group, but was part of the Other One.

 

If Sussex and Kent are a member of BACME, and to be a member of BACME according to there written terms you have to agree to support the implementation of current (2007) NICE CFS/ME guidelines and also the RCPCH's 'guidelines on CFS', (which cannot be anything other than code for supporting Crawley's guidelines and anything she promotes - are there even any RCPCH's published guidelines on 'CFS' or ME?) then this patient organisation cannot be said to be in alignment with any of the major patient organisations or the current Forward ME collaboration. So if the Cochrane group uses any patient rep from this organisation to fill the vacancy of a 'recovered patient' then this should be easy to challenge.

Bringing this up now because Barton promotes himself as a 'recovered patient' (and also as still having CFS/ME when it suits the situation, seems to depend who he's talking to...). I sincerely hope @Hilda Bastian recognises that BACME shouldn't be putting forward any patients to fill that role as there would be a very clear conflict of interest.

 

An RCPCH paediatric guideline was published in 2004:

http://rcpch.adlibhosting.com/files...d ME in Children and Young People 2004-12.pdf

Evidence Based Guideline for the Management of CFS/ME (Chronic Fatigue Syndrome/ Myalgic Encephalopathy) in Children and Young People December 2004

Jill Moss and Dr Nigel Speight were members of the Guideline Development Group. Ms Sheila Davies, Parent, was a lay member of the GDG.

 

So presumably as the new NICE guidelines covers children and young people they will make this guideline redundant and it would need to be removed given it is now over 16 years old.

Edit: I haven't had time to read this yet, thanks for linking it. It will be useful to see how this guideline compares to Crawley's approach as she is clearly the dominant player over the more recent years.

 

I don't know what the intentions are for this 2004 guideline once the new NICE CG is eventually released. I was quite surprised to find it still available on the RCPCH site. If I've remembered correctly, Jane Colby (TYMES Trust) was a member of the Delphi Group for this RCPCH 2004 guideline.

Indeed. I see NHS Bath Foundation Trust part funded this BRITISH PAEDIATRIC SURVEILLANCE UNIT, RCPCH study, for which Crawley is PI:

https://www.rcpch.ac.uk/sites/default/files/2019-03/protocolcard_cfs_01032019_0.pdf

SEVERE PAEDIATRIC CHRONIC FATIGUE SYNDROME OR MYALGIC ENCEPHALITIS (CFS/ME)

 

Do we have a thread on the forum on this study?

Mod note: The study was published in 2022
Severe myalgic encephalomyelitis/chronic fatigue syndrome in children and young people: a British Paediatric Surveillance Unit study 2022 Crawley et a

 

I don't know - but it's not coming up on a search of the study title.

 

It looks like a fairly neutral prevalence study but I still found my heart sinking when I read it. I suspect it is being done to support 'empire building', providing 'evidence' for the need to roll out online CBT programmes or for Crawley to be able to set up more clinics like the Bath one in those parts of the country which demonstrate most 'need'. I have no idea why I feel so cynical..

 

Has Crawley not done a more recent one ?

 

There have been a couple of papers co-authored with Crawley on treatment approaches, for example:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5939995/

Loades, M., Brigden, A., & Crawley, E. (2017). Current treatment approaches for paediatric CFS/ME. Paediatrics and child health, 27(9), 432–434. https://doi.org/10.1016/j.paed.2017.05.007


But I don't know whether more recent guidelines for clinicians have been published by Crawley, other than Patient Information Sheets and booklets for children and parents.

 

This paper is available on Sci-hub. I'm not giving a link as these keep changing.

 

An author manuscript is available here (html) and as a PDF:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5939995/

Paediatr Child Health (Oxford). Author manuscript; available in PMC 2018 May 8.

Published in final edited form as:
Paediatr Child Health (Oxford). 2017 Sep; 27(9): 432–434.
PMCID: PMC5939995
EMSID: EMS77424
PMID: 29750068
Current treatment approaches for paediatric CFS/ME
Maria Loades, Amberly Brigden, and Esther Crawley

 

try searching on the tag 'crawley'
here https://www.s4me.info/tags/