United Kingdom: Sussex & Kent ME/CFS Society News

More from Findley on the Lightning Process, here:

https://meagenda.wordpress.com/2010...e-anne-diamond-mecfs-shepherd-findley-parker/
Transcript of BBC Radio Berkshire Anne Diamond Show, broadcast 11 November 2010


Found what I was looking for:

https://meagenda.wordpress.com/2010...-parker-lightning-process-on-radio-berkshire/

Dr Charles Shepherd, Prof Leslie Findley and Phil Parker (Lightning Process) on Radio Berkshire

(...)

In 2007, Prof Leslie Findley had undertaken an informal, non RCT pilot study of the Lightning Process. No results from this pilot have been published but Prof Findley spoke to the Canadian media in an article here, in 2008, in which he quotes unremarkable results and reports that in small number of cases there can be bad relapses.

CBS News In Depth: Health
Lightning Process
Controversial training program comes to Canada (link now 404)
April 18, 2008 | By Zoe Cormier


Prof Findley had also given a presentation around the pilot study at the 2007 Ramsay Society Annual Meeting with a colleague, Gerrie de Vries. There is no English summary or note of this Ramsay Society meeting but photographs and notes were published, in German, by Regina Clos, which can be read in auto translate here:

Gerrie de Vries & Leslie J. Findley: “The Effects of the Lightning Process in the Management of Chronic Fatigue Syndrome – a start.” : http://tinyurl.com/sykesgermantoenglish

A personal account here on Bad Science Forum mentions Prof Findley’s involvement in “Neuro Behavioural Training” – an approach described as encompassing “Occupational Therapy, Clincal Hypnotherapy, Neuro Linguistic Programming, Cognitive Behaviour Therapy and Life Coaching”. Sessions take place over three days.

When asked about the Lightning Process, in today’s interview, Prof Findley said “…it’s been badly, badly applied, poorly researched and we would use it or recommend it probably in perhaps one in thirty or one in forty of patients, after they have been properly assessed over a long period of time and more standard management programmes have been applied” but he did not mention that he had, himself, undertaken an informal pilot in 2007.
 
CRG said:
Kent and Sussex have a total population circa 4 million, which if we take 250,000 as the UK patient number, would give a pro rata of around 15,000 patients in K&S. Compared to the MEA and AfME which have perhaps 4,000 members/subscribers/supporters each, 800 members would be favourable, at around 3 times the rate the National orgs are managing.

However without knowing the recruitment policies, subscription costs or member representation arrangements it's difficult to make much sense of what the organisation is about.
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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
 
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.
 
Graham said:
Actually the Sussex and Kent ME/CFS society was running before Colin Barton took over, and I gather there was some unpleasantness...
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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.
 
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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.
 
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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.
 
Simbindi said:
...are there even any RCPCH's published guidelines on 'CFS' or ME?
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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.
 
Dx Revision Watch said:
An RCPCH paediatric guideline was published in 2004:

http://rcpch.adlibhosting.com/files/Evidence Based Guideline for the Management of CFS and 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.
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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.
 
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Simbindi said:
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.
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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.

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.
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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)
 
Dx Revision Watch said:
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)
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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
 
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Dx Revision Watch said:
I don't know - but it's not coming up on a search of the study title.
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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..
 
Dx Revision Watch said:
An RCPCH paediatric guideline was published in 2004:

http://rcpch.adlibhosting.com/files/Evidence Based Guideline for the Management of CFS and 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.
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Has Crawley not done a more recent one ?
 
Amw66 said:
Has Crawley not done a more recent one ?
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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.
 
Dx Revision Watch said:
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.
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This paper is available on Sci-hub. I'm not giving a link as these keep changing.
 
Simbindi said:
This paper is available on Sci-hub. I'm not giving a link as these keep changing.
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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
 
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