ME/CFS services in the United Kingdom

Folks,

This has angered me. RE the 'Although there is no disease...' statement, there is no excuse for this.

I have drafted a letter to the Liverpool CFS Service and the trust's Patient Advice and Liason Service. It can be found here: https://docs.google.com/document/d/1vZi2vT4PKM96cSjgW3xhSTs0IzR6jrQduyyt832v53E/edit?usp=sharing

I intend to send to CFSpatientengagement@rlbuht.nhs.uk PALS&Complaints@rlbuht.nhs.uk Cfs-Meliverpool@nhs.net

 

The way the second sentence is worded is so problematic...
It implies that you are either pathologically devoted to others or lying. Tails we win, heads you lose.

Apart from being deshonest, and patronising, it is also revealing about their hubris. They can't be wrong. They can't imagine.

These people that are supposed to understand all the complexities of the human works are so deluded about themselves that it is unbelievable.

 

Liverpool has always been problematic over ME. I'm so glad my GP decided it wasn't worth sending me to these people!

 

A note that the address Cfs-Meliverpool@nhs.net which I obtained from the referral letter posted on the service's website, doesn't seem to exist now. I'm still not sure the letter has been sent to the most appropriate addresses...

 

If I were you,........ I'd phone a friend, "DR Mike B....? ! "

Liverpool
The Liverpool CFS/ME Therapy Service, Ward 10, Alexandra Wing, Broadgreen Hospital L14 3LB, part of the Royal Liverpool and Broadgreen University Hospitals Trust. Tel: 0151 282 6185.

Manager: Colette Foster
Enquiries and referrals should be made to the therapy service. We operate a referral form system, available at the trust website, which is reviewed by one of the medical team at a multi-disciplinary triage meeting.

The medical team are led by Dr Mike Beadsworth, consultant physician based at the Tropical and Infectious Disease Unit, Royal Liverpool Hospital. We take referrals from the north west region.

 

I'm not at all sure but could this be the address/right location? :

https://www.rlbuht.nhs.uk/contact-us/i-have-a-concern-complaint/

 

this PALS address is one of the three I have sent to

 

Is there evidence there’s too much adrenaline?

A little bit of deconditioning doesnt cause the ME symptoms, I wasn’t seriously decinditiond for years, although I am now, that didn’t stop any of my ME symptoms which were there from day one, many still here Day one zillion and sixty

If they really thought lack of deep sleep was a major cause why aren’t they pushing for better, larger sleep studies and why was the David Nutt important sleep drug study allowed to float inconclusively unfinished into space..

 

not sure on adrenaline, but the sleep studies have been pretty inconclusive.

 

https://twitter.com/user/status/1070828386786926592

https://twitter.com/user/status/1070828503522795520

 

Trudie Chalders book on Chronic Fatigue is cited as recommended reading by a lot of NHS sites (and worryingly also a number of support groups).
I haven't checked this out fully, but apparently you can get the audiobook for free here:
https://www.audiobooks.co.uk/audiobook/coping-with-chronic-fatigue/137287

(I found the link on Youtube and got as far as the intro by SW)

Something else that needs to change is that the NHS stop promoting this and her other publications on the subject as being applicable to ME patients.

 

Kent and Medway NHS
Chronic Fatigue Syndrome/Myalgic Encephalopathy Service

https://www.kmpt.nhs.uk/services/chronic-fatigue-syndromemyalgic-encephalopathy-service/7190

Grace Charitys report on the service

https://www.thegracecharityforme.org/kent-gps-and-patients/

 

The Cambridgeshire and Peterborough NHS Foundation Trust has a pain booklet (June 2018), specifically for ME/CFS patients.

It says;

"So why do some people with CFS and Fibromyalgia experience pain?

It is potentially due to central sensitisation. According to the Institute for Chronic Pain
(www.instituteforchronicpain.org) central sensitisation is a condition of the nervous
system that is associated with the development and maintenance of chronic pain."

http://www.cpft.nhs.uk/services/chronic-fatigue-syndrome-and-myalgic-encephalomyelitis.htm

I think it's very concerning (but not exactly surprising) that they are promoting the Institute for Chronic Pain's ideas.

http://www.instituteforchronicpain....in/what-is-chronic-pain/central-sensitization

And then there's the Institute's patient-blaming, gaslighting blog post that is basically claiming "false illness beliefs" as the reason for chronic pain;

"It starts with adopting an attitude that you are healthy even though you have chronic pain.

Begin by reflecting on this essay. Consider the possibility that understanding your chronic pain as a long-lasting injury or illness leads naturally to behaviors that healthcare providers recommend against doing: staying home from work, resting, guarding the painful body part, taking pain medicines.

This combination of beliefs, perceptions and behaviors lead to what we call identifying with the sick role. It puts you in a dependent role to your healthcare providers, on whom you rely to make you better. It also often puts you in a dependent role to family members, on whom you rely to take up the slack of what you can’t do.

However, healthcare providers don’t have many effective ways to make you better, short of helping you to engage in the above recommendations.

Reliance on family can foster guilt in you or increased stress and conflict with them. So, in all, experiencing pain through the lens of the sick role doesn’t typically amount to much improvement and sometimes it can even make your overall situation in life worse.

Maybe, then, it’s time to re-think how you think about pain.

Once you decide that it is in your interest to be open to learning new ways to respond to pain, then practice thinking of yourself as a healthy person with persistent pain."

http://www.instituteforchronicpain....e-having-chronic-pain-coping-with-pain-series

The pain booklet also has a link to Lorimer Moseley's Tame the Beast video. (I haven't yet looked at the other links they suggest, or all of their other booklets.)

 

Odds of that person being willing to put this idea to a test on themselves: 0.

Odds of that person finding that this idea really works on themselves: also 0.

"Have you tried not being sick?" This ain't it, chief.

 

Our ongoing battle with the new 'lead" ME and CFS CCG..........

Today I discovered two important reports (described as Evidence briefings) had been delivered on our commissioned regional services and the influence of the NICE Guidance ......and the CCG had not alerted or informed us.
It forms part of whopping 260 or so pages for the Joint Commissioning Meeting on lots of local issues, so I have extracted the reports as I have not been given access to them separately.

"The Norfolk and Suffolk Primary and Community Care Research Office have provided two evidence briefings to inform interim commissioning intentions ahead of the publication of NICE guidance.
The briefings demonstrate that the current specification continues to meet NICE guidance and also highlights the differing commissioning arrangements across England"
I would be interested in peopl's thoughts and ask advisability that this should be offered to NICE?

 

A lot of that referred to matters I'm not aware of the details of (eg the survey they were looking at). tbh I have such a poor understanding of the politics around funding of services that I suspect I missed a lot.

I thought those documents show how difficult it will be to argue for specialist services to be provided for CFS which do not rely on CBT and risk end up employing people who do more harm than good.

A couple of things:

That White piece included the sort of anti-patient spin you'd expect.

This was the reports conclusion on GET, which was certainly more sceptical than it would have been a few years ago:

 

Many thanks for casting your eye. It's really helpful and yes, ...."....those documents show how difficult it will be to argue for specialist services to be provided for CFS which do not rely on CBT and risk end up employing people who do more harm than good." THIS is what NICE must address ,..... over to Adam, Sally, Sarah, Jo E, Willy Weir, Charles and Luis?? and chair and vice chair of course and it also is backed up by the feedback from NHS 'Benchmarking' exercises!
"NHS Benchmarking Network
A part of the National Health Service

According to their website, "The Network was established in 1996 in response to a need for NHS organisations to work together to improve services rather than to continually “reinvent the wheel”. The Network is hosted on behalf of the NHS by East London NHS Foundation Trust, with web hosting provided by the North West CSU and finance services provided by North of England CSU......"

 

We have encountered a blip in Suffolk. Having some creative thoughts about service provision and a specialist service head.
In order to maintain a two tier service- for adults primarily;

1. mild/ moderate, diagnosis and management-

2. on going review and moderate to severe patient needs.

Putting together some evidence based and other documents in prep for conversation with commissioners and contract staff. Suffolk have the money via 'unmet need'- Independent funding request (IFR) so I bet they might jump at the chance for a resolution albeit another "suck it and see". With several experts in background as expert adviser and NICE CCG members and Jo Edward in the wings?....... I am looking at rheumatology departments locally, as long as they are not BSP inclined ...who see fibro cases regularly. Thoughts and comments welcome.....!
https://www.verywellhealth.com/chronic-fatigue-syndrome-diagnosis-715760

 

It looks to me that this report was quite heavily influenced by advice from Luis Nacul. As I understand it Luis considers GET contraindicated. His view on CBT is that general CBT may be helpful as part of a package but CBT is not first line treatment for ME for se.

It is interesting that somehow it has crept in to the report that resurrecting CBT might be a good idea - on the grounds that patients ask for it.

It is also interesting to see that the current team is medical plus OT only (with a bit of physic maybe). That seems very appropriate to me. OTs have a long track record of just sorting out practical problems with common sense and they tend to have a broader range of skills than physiotherapists or psychotherapists. The constant lobbying for a 'multidisciplinary team' is depressing. I think we need doctors with specialist experience and either community trained nurses or OTs.

I agree that the documents give an idea of the treacle that has to be waded through in order to get something sensible established. The first step will be NICE guidelines. NICE claims not to deal with the delivery aspect and I think the key thing is going to be identifying which treatment modalities have reliable evidence. I would go for what Fiona Godlee says in the Swiss Re conference video: 'If we don't know, let's be silent' (i.e. not recommend).