ME/CFS services in the United Kingdom

[NelliePledge]

This is the problem pacing up rather than pacing yourself

 

[Skycloud]

I am wondering who R and K ME Group is?

Website : https://www.richmondandkingstonmegroup.org.uk/

ABOUT US

Richmond and Kingston ME Group, are a support group for people with Myalgic Encephalomyelitis (ME), also know as Chronic Fatigue Syndrome (CFS), and our mission is to provide support to anyone affected by ME/CFS.

Our purpose is to reduce isolation, provide support and information to our members, reach new members, raise public awareness of ME/CFS and its devastating effect on people and their families.

We provide training sessions locally for medical, education, social and other welfare support services to increase understanding of ME/CFS.
We are also involved in campaigning for better local and domiciliary services for people with this condition and in supporting biomedical research into ME/CFS.

Also from their home page:

The most important aspect of treatment is activity management — which involves striking the right balance between activity and rest so as not to exacerbate symptoms. This is known as pacing.

 

[Jonathan Edwards]

Website : https://www.richmondandkingstonmegroup.org.uk/

Yes, but I wonder who is involved.
Who is providing 'training sessions' I wonder?

 

[Sasha]

Our understanding is that GAM is finding a baseline of activities that doesn't make our symptoms worse and then gradually increase it. In other words, it's pacing instead of GET. However, let's wait for the publication of the new Guidelines to confirm this.

That isn't pacing as I understand it. My understanding is that there should be no deliberate increasing of activity unless the person is well enough for it to be within their baseline. In other words the above makes no sense. GAM is GET.

This GAM is exactly GET. When I was instructed in GET at an NHS ME/CFS centre, I was told to first establish such a baseline and then grade up.

 

[Invisible Woman]

This GAM is exactly GET. When I was instructed in GET at an NHS ME/CFS centre, I was told to first establish such a baseline and then grade up.

Yep. I think this is why in the initial stages people think the treatment will work. Initially they're advised to cut back on activity to a level where symptoms are improved and they feel a lot better.

The initial increments may well still be below any noticeable PEM threshold. So you could be a fair way through the course of therapy and committed to it before the problems start.

In the early days, maybe because I didn't know what PEM was and didn't understand the range of triggers etc, I seemed to recover more quickly.

It's a bit like those boiler room invest scams. They get you to invest a little bit and you get a great return so you're encouraged to put in more money & that sees a return too. Then when you're confident they're genuine you invest a larger pot of money and lose the lot.

 

[rvallee]

They've just changed the name to GAM (graded activity management). What they were calling GET sometimes turned out to be more like APT (adaptive pacing therapy as per PACE). But none of them are 'pacing'.
The key thing to spot is when if they talk about 'boom and bust'.

Activity management sounds like handling kindergartners. It's like they can't help themselves being condescending, even when they have to do pacing, they will give it the most possibly insulting name as if we're just a bunch of toddlers who need our activities managed. And of course it's the graded part that is explicitly wrong so the fact that it's the only part they kept is amazingly incompetent.

Yes, it's very embarrassing to admit having been wrong all those years and done enormous harm to millions. Deal with it.

 

[FMMM1]

I'm surprised that an NHS clinic would not stick to the guidelines - OK strictly speaking the new guidelines haven't been adopted yet.

Perhaps a route to challenge this would be for a charity to contact the health trust and ask if this is within the new guidelines? You might find that the health trusts legal Department would appreciate the heads up - rather than a letter from a solicitor in relation to the treatment of their client!

 

[Sly Saint]

Wait I thought boom and bust was the same as push crash, with the idea that you don't push so you are less likely to crash, is it not that?

"boom and bust" is what they (PACE trial authors and subsequent 'followers' of the deconditioning fear/avoidance theory) used in the original description of how CFS(ME) is supposedly perpetuated.
This then was also incorporated into the APT (adaptive pacing therapy) that a lot of clinics and AfME sold/sell as pacing.

'push crash' came later (I think it started in US). This was more to explain what triggers PEM (as we understand it). ie 'Exert yourself too hard physically and/or mentally and you 'crash'", "You have pushed too much for too long". So nothing to do with deconditioning.

But recently some have switched using the term 'boom and bust' and replacing it with 'push and crash'.

 

[Sly Saint]

job ad
Band 6 - Specialist Occupational Therapist

Job Summary:

This is new clinic (Long Covid) which sits and works alongside the well-established chronic fatigue syndrome / Myalgic Encephalomyelitis (CFS/ME). Monies will be temporary which is likely to be March 2022.

Ideally we are looking for Occupational Therapists who have experience in Biopsychosocial work / Open Systems Models e.g. Assessment and Management of CFS/ME - FND - Pain Management, Neurosciences ; Mental Health.

https://www.reed.co.uk/jobs/band-6-...s&filter=/jobs/health-jobs?sortby=DisplayDate

 

[Haveyoutriedyoga]

does anyone know how many of the LC clinics are also ME/CFS clinics

I'm not certain it's exactly the same across the country but in most areas the long covid "clinic" is an assessment/triage pitstop type service, patients then get referred to IAPT, the ME service, or other secondary care services when they can deal with specific symptoms and do specific tests. In most areas areas ME services have had extra funding to run separate long covid groups *for those who meet the criteria for ME*.

 

[Haveyoutriedyoga]

... what we need to concentrate on now post publication...[...]...
3. Commission new better services
4. Audit current services to see if compliant to the new guideline
5. Join Commissioning groups and Patient groups to try and influence
...

...This complexity means that dealing with how the existing/future clinics operate needs to be a co-operative process across the UK, and needs to be set in the context of how 100% of PwME access services...

How can we ensure we are involved in and heard in the changes that are going to come? Does anybody have any specifics on what the charities are going to do to influence service redesign?

The NHS restructure is making everything more local and place based, after the NHS national guidelines are set, new services and redesigns will be done at CCG level and at least in token form they will involve patients and the public in that process. How exactly can we make sure we are at the table and how do the charities contribute?

I can't even begin thinking about how quality and compliance will be ensured.

 

[daftasabrush]

Merged thread

Graded Activity Therapy (GAT) as a renamed Graded Exercise Therapy



A thread to record where Graded Exercise Therapy is being carried out, researched or promoted by calling it Graded Activity Therapy instead.

There might be places where GET has been renamed Activity Management, Energy Management or similar.

1. Group Rehabilitation Programme
for people with CFS / ME (2018). SESSION 1
Delivered by the South Tees Specialist CFS/ME Service. Slide 17. South Tees Hospitals NHS Foundation Trust.

Graded Exercise Therapy = Graded Activity Therapy.​

(that's the entire slide)

2. Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalopathy (ME) Management Programme
Salford Royal NHS Foundation Trust 2021. Web version. Review date: June 2023.

The aim of cognitive-behaviour and graded activity therapy is not simply to be more active, but to make activity and rest consistent, rather than symptom dependent. By doing this you will be able to gradually increase your ability to carry out everyday activities while slowly cutting down on excessive rest.​

(basically exactly like GET)

3. Sharpe and Campling's CFS book p157

GET is similar in many ways to CBT, but it concentrates more on changing coping behaviour rather than thinking. It might be better called graded activity therapy.​

4. Guided graded exercise self-help for chronic fatigue syndrome: Patient experiences and perceptions
Cheshire, A., Ridge, Damien T., Clarke, L. and White, P.D.

However, the results also suggest that individuals who have been ill with CFS/ME for a relatively longer period of time and have additional comorbid conditions may benefit from more intensive and bespoke therapy, additional or substitute treatments (e.g. CBT), or a broader graded activity approach which also considered mental energy expenditure [30, 31].​

30. Powell P, Bentall RP, Nye FJ, et al. Patient education to encourage graded exercise in chronic fatigue syndrome [Journal Article]. British Journal of Psychiatry. 2004 2004-02-01 00:00:00;184(2):142-146. doi: 10.1192/bjp.184.2.142.​

31. Knoop H, Bleijenberg G, Gielissen MFM, et al. Is a Full Recovery Possible after Cognitive Behavioural Therapy for Chronic Fatigue Syndrome? Psychotherapy and Psychosomatics. 2007;76(3):171-176.

5. Wright, Fiona. "CHRONIC FATIGUE SYNDROME, OCCUPATIONAL THERAPY AND SLEEP." An Occupational Therapist's Guide to Sleep and Sleep Problems (2015).

Evidence from single-and multi-centre controlled trials, with outpatients who can attend clinics regularly, suggests that cognitive behaviour therapy (CBT) and graded exercise/graded activity therapy (GET/GAT) are the most suitable approaches in facilitating management of CFS...​

6. Royal Derby Hospital ME/CFS Clinic 2020.

Graded activity/exercise
Physical activity is important for general health, reducing fatigue and pain, increasing muscle strength, improving concentration and helping sleep. A programme of physical activity or exercise with manageable levels is agreed where appropriate to each individual.
Goal setting
It is important to reintroduce activities that have been lost as a result of symptoms. Similar to graded activity/exercise, this is done through goal setting in a graded way.
​

ME Association - confused patient asks about GAT (2018).​

7. Bedfordshire Chronic Fatigue Service. NHS East London.

This service offers NICE recommended Cognitive Behaviour Therapy (CBT) and Graded Activity Management (GAM).​

(updated a few days ago, thanks to whoever pointed this out on S4ME)

Also relevant: All about ME booklet. Action for ME (2015). pretending GAT ID NOT GET.

Your Child and M.E. (2013), Action for ME and AYME but hosted by Cumbria NHS Persistent Physical Symptoms service, which is the CFS/ME clinic name.

 

[DokaGirl]

This looks like it's going to be lots of work for groups and individual activists to educate pwME, their families and the public. Oh, yeah, and health care workers.

 

[Tilly]

This posts and following posts have been moved from the NICE guideline thread.

He doesn't run a centre. There are NO doctors at any ME/CFS centres anywhere in Cumbria, that's been the case for at least 8 years, since the North Cumbria and Northumberland Trust merger was called out... a once a month BPS doctor from Newcastle area did diagnosis only. (And botched mine by inventing a term not in SNOWMED).

Reporting for speaking as if on behalf of a clinic he does not represent in a field he does not work in is essential. Also undermining those who do work there.

That made me AngreMad. It is the case all over the UK that they just diagnose and then you self manage. Has anyone looked at this? I normally support families where I have to fight off intervention of the very nasty kind. I am now looking at transition as my son is now going over to Adult services and well now reading my areas new and most wonderful (not) website no mention of PEM POTS or OI. Now making notes which I will send but they wont change or care because there is no need who is going to make them?

 

[Tilly]

Dr Alastair Miller, things to know for anyone being interviewed or engaging with media

BBC, Guardian (links previously posted on this thread) and others describe him as:

an NHS consultant physician in acute medicine and infectious disease in North Cumbria, said exercise programmes could be helpful​

Reality: Yes technically his role but entirely unrelated to ME/CFS treatment in North Cumbria or anything else.
Reality: These interviews are misleading because the public will assume there actually ARE doctors treating ME/CFS across the UK - this is not true in North Cumbria, South Cumbria or many other areas.

His context-less quotes are misleading because

• He doesn't work in or have any role in ME/CFS any more and has not for I believe around a decade
• North Cumbria does not have ANY infectious disease specialists in their "specialist ME/CFS service"
• North Cumbria does not have ANY doctors of ANY kind in their "specialist ME/CFS services"
• North Cumbria's ME/CFS service does not diagnose, it used to but they scrapped that, it does not offer any medical advice and does not advise on medication at all (links below)
• South Cumbria does not either have any ME/CFS clinic doctors either, this is probably true of North Lancashire too
• North Cumbria's old ME/CFS and fibromyalgia clinic morphed into a general service a little over 10 years ago, which was then renamed Persistent Physical Symptoms, all treatment was refused unless you agreed to a psych session on the 3Ps
• Persistent Physical Symptoms is now part of the Physical Health Psychology unit, but it is not the part that deals with MS, stroke, or well understood diagnoses
• It is held at community (cottage) hospitals, at least one of which is in the only non-wheelchair accessible part of the hospital - and upstairs.
• Diane L Cox of PACE trial is in this area, and in-patient "rehab" is the North Yorkshire / Leeds BPS hospital unit which published a paper on their "successes" which involved a lot of removing diagnoses. I believe she's an Occupational Therapist. Severe and very severe patients with chronic fatigue syndrome: perceived outcome following an inpatient programme (2000)

So tired of hearing a doctor NOT impacted quoted and of the misleading impression that there are actually doctors involved when there aren't.

I would really like to see Dr Miller challenged on his role within the ME/CFS clinincs at present (he doesn't have one) and asked how many doctors are in his NHS trust for ME/CFS (none). Number of home visits is also zero unless something has dramatically changed.
https://php.cumbria.nhs.uk/

https://php.cumbria.nhs.uk/about-our-services/ppss
https://php.cumbria.nhs.uk/about-ou...lth-and-rehabilitation-psychology/cfs-service

I am unsure how it is ever possible to get media corrections or clarifications when such misleading content is published. I feel the public would feel very differently if they were aware that doctors were not part of these clinics.

I can tweet the information if that will help? embarrass the BBC and journalists. I'm just about to do that with the services in my area as it is a joke. They have belittled and made the link child like and don't mention well anything medical it is all given headings of well look https://me.ecch.org/rough-guide-to-me-cfs/

 

[Jonathan Edwards]

They have belittled and made the link child like and don't mention well anything medical it is all given headings of well look https://me.ecch.org/rough-guide-to-me-cfs/

Do you know where this is from @Suffolkres ?

I agree that there are problems with information like this.

Maybe now is the time to try to bring some sense into information for ME.

 

[Amw66]

Do you know where this is from @Suffolkres ?

I agree that there are problems with information like this.

Maybe now is the time to try to bring some sense into information for ME.

from webpage -
East Coast Community Healthcare CIC

Hamilton House
Battery Green Road
Lowestoft
Suffolk
NR32 1DE

Tel. 01502 445445

Email. ecch.enquiry@nhs.net

 

[daftasabrush]

That made me AngreMad. It is the case all over the UK that they just diagnose and then you self manage. Has anyone looked at this? I normally support families where I have to fight off intervention of the very nasty kind. I am now looking at transition as my son is now going over to Adult services and well now reading my areas new and most wonderful (not) website no mention of PEM POTS or OI. Now making notes which I will send but they wont change or care because there is no need who is going to make them?

They don't diagnose - only doctors diagnose - but this is not an isolated case either.

Nuneaton, Warwickshire is OT led and rehab only

Newcastle's Chronic Fatigue Syndrome/ME therapy psychology service is under the health psychology department but claims to have doctors for infectious diseases. I think Julia Newton *might* have links with that one.

I can tweet the information if that will help? embarrass the BBC and journalists. I'm just about to do that with the services in my area as it is a joke. They have belittled and made the link child like and don't mention well anything medical it is all given headings of well look https://me.ecch.org/rough-guide-to-me-cfs/

please tweet asap - thank you

 

[CRG]

How can we ensure we are involved in and heard in the changes that are going to come? Does anybody have any specifics on what the charities are going to do to influence service redesign?

The NHS restructure is making everything more local and place based, after the NHS national guidelines are set, new services and redesigns will be done at CCG level and at least in token form they will involve patients and the public in that process. How exactly can we make sure we are at the table and how do the charities contribute?

I can't even begin thinking about how quality and compliance will be ensured.

This really is a time for co-ordinated action, at the very least many hundreds of letters need to be written, and ideally those letters need to reflect 'local stakeholding' (yes I know "yuk", but we need think in terms of bureaucratic audience we have to address). Even in NI, Scotland and Wales where commissioning is notionally at least, done at devolved Government level, local providers/potential providers need to be contacted to alert them to local concern/service demand. In England as a you say 'localism' rules with apprx 250 CCGs to be engaged with.

The NHS financial year runs April to March, with service contracts mirroring this. New contracts can be signed at any point but March is a target date for having service alterations in place and for having budget allocations for new contracts agreed ahead of the new Financial Year. The opportunity to get the provisions of the 2021 Guideline reflected in existing contracts really shouldn't be missed - allowing a roll over to future years will see a loss of momentum and further ossification of bad practice.

I'm not sure that any of the ME/CFS patient orgs are nimble enough or if they are, have the resources, to both agree on a strategy between them and to then push that out across four Governmental Administrations and 500 or so local commissioners/providers. It's going to be a major test of what the UK ME/CFS community is capable of.

Edit to add "further"

 

[daftasabrush]

Looks like there are a considerable number of doctor-less services, some appear to be Dr led but the "Dr" is s psychologist with a PhD - psychiatrists are medical doctors, clinical psychologists are never medically qualified.

Example - Harrogate and Skipton NHS
https://www.hdft.nhs.uk/services/li...tigue-syndrome-me-service/#how-the-team-works

Key staff
Physiotherapists: Steve Bathe and Gill Fearnley

Occupational Therapists: Julie Robinson and Susan Rathmell

Clinical Psychologists: Dr Georgina Caton, Dr Zoe Tillotson and Dr Sharon McKenna

Administrators: Anita Curtis, Krystyna Wappett

The MEA directory of CFS/ME Services is pretty useful in finding many of these.

The more people who can publicly mention this the better, my social media following is virtually nil thanks to severe ME.