ME/CFS services in the United Kingdom

Being "fair" to Colin Barton is not the issue. Barton disparages ME patients who disagree with him and his stance on ME services. Barton's Society were involved in establishing Sussex CBT/GET Services in 2008, and are still involved in Brighton and Sussex NHS services for ME.




The first Clinical Lead of Sussex 'CFS/ME' Services was Dr Brian Marien of the Health Psychology Unit, King Edward VII Hospital, Midhurst, West Sussex. Brian Marien is a GP and Bart's trained CBT specialist who in 2008 had two private CBT Clinics in Sussex.

Dr Brian Marien was one of the many BPS doctors at the 2002 Novartis funded 2 day conference on Biopsychosocial Medicine at which the strategies for establishing BPS medicine in the NHS were thrashed out.

http://www.margaretwilliams.me/2005/proof-positive.pdf





The second Clinical Lead of Sussex NHS 'CFS/ME Services' was Dr Michael Broughton, a GP. Dr Michael Broughton, and Phil Parker, introduced Lightning Process to the Society's members.

The 2008 Sussex CFS Society Annual Conference hosted a Lightning Process stand by the owner of a local Lightning Process Centre, Linda Morgan, called the Swallows Retreat.



Lightning Process Trainer Linda Morgan hosted a get together for her LP graduates, who all seemed to be teenage girls, some stated they had recovered from ME by doing Lightning with Linda. At the get-together at the Swallows Lightning Process Retreat were Sussex NHS CFS Clinical Lead Dr Michael Broughton and Phil Parker:



Phil Parker at Swallows
Sunday, March 1, 2009 At 8:26PM

'Phil Parker visited Swallows Retreat to meet with Dr. Michael Broughton, Consultant Specialist ME/CFS Sussex, and Colin Barton of the Sussex and Kent ME Society.

They joined Linda for a Summer barbecue in Swallows garden, looking at its best in July, and thirty graduates of the Lightning Process for M.E. at Swallows, who enjoyed the opportunity to thank Phil Parker, Developer of the Lightning Process for the difference he has made in their lives.

Some took the opportunity to swim in the pool and the party went on after Dr. Broughton and Phil Parker had to return to their respective clinics.

Dr. Mike Broughton and Phil Parker are now in consultation about further clinical trials beyond the year long one currently being undertaken with Linda's Lightning Process participants at Swallows.

https://web.archive.org/web/2009071...uk/home/2009/3/1/phil-parker-at-swallows.html




2018:

'Sussex ME/CFS Society Patron, the actress Jenny Seagrove, added: “Sussex ME Society provides absolutely vital support to those people in society who suffer this debilitating and much misunderstood condition.

“At last research is being done into ME and also into the plasticity of the brain and nervous system, so perhaps hope will be allowed to shine its light into the darkness of some people’s lives.”

https://www.gscene.com/news/sussex-m-e-society-marks-30th-anniversary/





2015:
'During the October UK CFS/ME Research Collaborative conference in Newcastle, neurologist Dr Mark Edwards announced that a team of scientists wants to test a new theory for how functional symptoms can arise from the brain.

The project, which is being funded by the Medical Research Council will involve three scientists – Dr Mark Edwards, a neurologist at the Motor Neurosciences Unit, UCL Institute of Neurology, Dr. Neil Harrison from the University of Sussex and Dr James Kilner at University College London.

'Colin Barton, chairman of Sussex ME/CFS Society, says: “We are delighted to be able to assist with this important study.”

https://www.gscene.com/news/health/me-research-study-planned/

 

job ad
Assistant Psychologist - Familiar Faces NHS Cumbria

https://findajob.dwp.gov.uk/details/10168694

 

What is the point of an NHS service that caters for well beings? Where do the unwell beings go? Orwell would have been proud of them.

 

'Familiar faces' with that dept label being based on the patients being seen lots by the health system? I can't help but think it's just another version of 'frequent flyers' - is that a label that is going to brand patients, particularly if they might well (often the case with these ideas) end up there despite not having been to the health system a lot and so the name is communicating something that isn't true (almost as a diagnosis in itself)?

I've no doubt these thing happen with code names, assumptions,on the down low etc but am I reading this wrong or is it actually this?

 

She’s lucky. The last thing you’d want as a severe ME/CFS patient is to appear on the radar of UK “services”.

 

job ad
Psychological therapist ME and HIV

https://www.healthjobsuk.com/job/UK...undation_Trust/Psychology/Psychology-v4630889

 

job ad University college London (UCLH)
Highly Specialist Occupational Therapist

https://www.nurses.co.uk/jobs/17608...university-college-hospital-london-nhs-trust/

highly specialist? try getting the name right, .......knowledge of NICE guidelines(?)
"autogenic trainers" not heard of those before:

 

This is the service description: Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FMS) Service

"What are Chronic Fatigue Syndrome and Fibromyalgia ?

They are chronic conditions (lasting months or years) which affect daily functioning and involve chronic fatigue not much relieved by rest (defining ME/CFS) and made worse by exertion, chronic widespread muscle pain (defining FMS), sleep disturbance (particularly unrefreshing sleep), concentration difficulties, and sometimes mood disturbance, headaches, intestinal, urinary and a range of other possible symptoms."

What are the aims of the Service ?

"The service is based on NICE (National Institute of Health and Care Excellence) and EULAR (European Alliance of Associations for Rheumatology) guidelines for these conditions.

• Help you understand your condition
• Enable you to develop helpful coping strategies to manage symptoms
• Reduce distress and disability
• Improve your quality of life

We use a holistic approach, meaning that we look at the physical and the psychological aspects of the illness."

 

dorset NHS job ad
Specialist CFS/ME Occupational Therapist

https://healthjobs.bmj.com/job/61914/b7-specialist-cfs-me-occupational-therapist/

 

All a bit unknown apart from the CFS/ME guideline starting to feel like it is being used as code to not set up ME/CFS centres (King's College London's response was 'we don't treat ME/CFS) being the latest tactic used so that MUST be updated.

Seems fair and basic at this stage if money is being spent that can't be turned back that they have the good grace to be clear about whether it is for the right condition. I'm surprised if it is new guidelin that there is no mention of PEM but that seems to be one thing all are complicit in. It's pretty key for OT though. As the SolveME/CFS presentation showed.

Otherwise they should explain, in full, which guideline they are using to the ME Association given no clarity is given throughout the rest of any of the accompanying documents.

There is quite a difference between what a CFS/ME 2007 guideline occupational therapist would do and who they are safe to treat vs the new guideline and using ME/CFS.

I also find it offensive that the NHS doesn't think they need to update this term given it is basically saying 'we are unsafe for you' vs 'we might be safe'. And they should know that - if they don't should explain which box the fall into that explains it of: deluded/self-deluded/false beliefs, incompetent/unable to understand what their profession says they should, have an agenda that has nothing to do with patient safety or care above patient safety/care.

 

"The post holder will be offering assessment and treatment to individuals with HIV or ME/chronic fatigue syndrome who may have complex life experiences of trauma, mental health conditions or substance use which may affect the management of their physical, emotional and mental health."

So not actually only referring treating 'only those who have whatever trauma' but it looks like a dodgy workaround for the ME/CFS guidelines, as it is referring all only some of whom might have this - although I'm not aware of any research saying that is the case?

Insidious stuff

EDIT*
Is this not stigma creation obvious and clear? Why does this 'NHS' allow such revolting underhand bigotry?

Where did HIV get put with ME/CFS other than both suffering abuse at the hands of the medical profession?

And yes given the department this is coming from I hold them accountable for deliberate stigma creation - not even any evidence for the connection, yet doing something which will harm psychological health of people. Trying to help my backside. This is like some nasty person at work spreading a rumour to exclude someone then pretending 'of course it's only because I care' - which should also be outlawed and seen through as no caveat at all for such behaviour.

 

I'm sorry but viewing the recent onslaught of job description it feels like I was right and anyone previously involved with bad treatment should be required to go through deprogramming before they are allowed anywhere near any vulnerable patients.

Jobs should not be being signed off, and those who are being allowed to advertise these should have this power removed and them be prioritised for deprogramming and redeployment (unless after this they happen to be one of the few with the skills that would be appropriate for the real useful care of those with ME/CFS in which case they can be retrained in that like those who haven't been deluded by false beliefs for however many decades).

What % of the NHS is now only competent in or prepared to deliver psychosomatic psuedotreatment? No wonder the rest of the staff are worked off their feet.

 

I read it somewhat differently. It's not unusual for an OT to have a broad range of health impairments within their client group - in this case the OT is taking clients from two separately defined services, the HIV service and the ME/CFS service. It may be unfortunate wording - though of course it is targeted at potential post holders who will explore the meaning if they find ambiguity - but all of the words: "complex life experiences of trauma, mental health conditions or substance use which may affect the management of their physical, emotional and mental health" apply accurately to the HIV service patient base. Fitting ME/CFS in there is just bad parsing by whoever wrote up the post description.

Setting aside whether or not this particular post is any help to PwME, I don't think there is anything especially malign about it, just not a very good job by someone in HR - I can imagine a temp worker being handed a bunch of docs re: past posts, multiple departments and some service descriptions and told a full job description is needed for listing online by yesterday, and to "just do what they can with it !"

 

This is from the psychological therapist job ad - I probably managed to not make that clear somehow so apologies. Hence why it's about treating the 'trauma' rather than OT ofr the illness needing to be aware that I'm noting - it seems the whole point of the job is this supposed trauma and issues (rather than the condition as we know it)

 

My immediate reaction was: while it's very nice for them to be offering treatment to this (presumably very small) subgroup of pwME, what if anything are they doing for the majority of pwME, who don't have complex life experiences of trauma, mental health conditions or substance use, or for that matter who do have complex life experiences of trauma, mental health conditions or substance use but they aren't affecting management?

 

The way I read it was that is what they are offering assessment and treatment to those with ME/CFS and HIV specifically - it is within these services that the post is based (I'm assuming either it's some strange 'just in case' or 'to rule out' or because there is some idea there is a higher than for normal people likelihood) and so said person needs to be trained in these because they are affecting patient's ability to self-manage/have managed their physical, emotional and mental health. What they are assessing and treating is of interest rather here, I'm not sure this is an 'add-on'.

There is a bit more in the job description noting it seems to be what they offer as 'the ME/CFS service', but also have found the following FOI from 2017: https://www.whatdotheyknow.com/request/sussex_wide_cfsme_service_policy

other bits:

 

ME double confusion !

Even so I don't see the PT post as any more malign than the OT post. If we are talking about the ad structure, then however bad, it does only have a very small target audience, if the actual job structure is of concern then being shared across services or departments is a common arrangement - it means the NHS is offering a complete full time post with all the implicit benefits of pension, job security, holiday and career progression, as opposed to offering a mess of part time appointments that may disadvantage employees.

A competent PT can reasonably be expected to switch between the separate needs of HIV and ME/CFS patients. I didn't read the ad (now closed) as implying that every person encountering the Sussex CFS service would be passed on to this PT - rather this post is to support ME/CFS patients who are in need of particular psychological support - indeed given the Sussex NHS core population we might expect there to be between 3500 and 7000 PwME within its ambit, while one PT might at best offer 1900 sessions in a year, with each patient needing multiple sessions and the service shared with the high demand HIV sector, it's difficult to see the PT supporting more than 150 ME/CFS patients a year.

Of course that doesn't speak to the value or effectiveness of what is being offered but that can only be known by surveying those who have used the service, because we can't know what support they were seeking beyond help with the usual ME/CFS symptomology. There's no reason to think that ME/CFS patients are any less in need of psychological services than any other part of the population - the only issue is whether the service available is relevant to need. That's a conversation that as far as I'm aware still needs to be had.

 

ME/CFS Service Manthorpe Centre Lincolnshire Partnership NHS Foundation Trust
Grantham and District Hospital

https://www.lpft.nhs.uk/our-services/adults/me-chronic-fatigue-syndrome-service
yay.