UK: Specialist Rehabilitation Medicine Services for ME/CFS and Long Covid

[livinglighter]

Moved post

BJGP Life: Opinion Piece: Reflections on NICE, CFS/ME, and the Lightning Process

"Anna Chellamuthu is a GP Specialty Doctor in Oncology at Royal Cornwall Hospital, a GP Locum and Lightning Process Practitioner.

I have never (not knowingly anyway) disregarded a NICE recommendation before now.

I have been a GP for 16 years, working in a range of environments from suburbia to deprived inner city and in a specialised practice for the homeless and vulnerably housed.

8 years ago our 7 ½-year-old daughter was diagnosed with ME/CFS. I knew all too well how little the NHS had to offer. However, we followed the advice of the local CFS service, practised ‘energy management’, ‘pacing’ and watched our previously full of life daughter become essentially bed/sofa bound. She struggled on like this for 2 1/2 years. ME is a devastating disease.
Then we heard about The Lightning Process (LP). A mind-brain-body approach in which people from all ages were getting their health back. We looked into it, spoke to several people who had taken the training course, and took the plunge. Yes, it cost us financially and we knew it might not work – no one was promising us 100% success. But I could see that it had helped literally 1000s of others over the years, so why not our daughter?"

https://bjgplife.com/reflections-on-nice-cfs-me-and-the-lightning-process/

This post may be taking the current discussion slightly off track, but I didn't intend it to as my first immediate thought when reading the opinion piece was the RCP's refusal to champion the new guidelines has influenced such propaganda, so I thought I would check to see if they changed their position following the roundtable meeting as I hadn't followed up.

I think I googled 'Royal Collage of Physicians ME Guideline' which led to this page https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs

As I read through the web page I was drawn to the following paragraph.

Specialist rehabilitation medicine services and exercise medicine services regularly look after patients with ME/CFS (and also provide complex care and long-term support for very severe ME/CFS) but are not specifically recommended in the guidance. There are very few dedicated ME/CFS specialist services either in the community or hospital setting and thus if commissioners do not use specialist rehabilitation medicine services and exercise medicine services, these patients will lose out.

So I searched 'Specialist rehabilitation medicine services NHS' and 'exercise medicine services NHS UK'

Here is what came up;

https://www.google.com/search?q=exercise+medicine+services+NHS+UK&rlz=1C5CHFA_enGB898GB898&sxsrf=APq-WBtrIj5V2HtYmcmqoCVjtbhaXTyITQ:1646367995227&ei=-5QhYsyrDY6fgQaW-JaIBQ&ved=0ahUKEwiMlZnczqv2AhWOT8AKHRa8BVEQ4dUDCA4&uact=5&oq=exercise+medicine+services+NHS+UK&gs_lcp=Cgdnd3Mtd2l6EAM6BwgjELADECc6BwgAEEcQsAM6BwgjELACECdKBAhBGABKBAhGGABQ8QhY-Rdgsh9oAXABeACAAUSIAe8BkgEBNJgBAKABAcgBCcABAQ&sclient=gws-wiz

https://www.google.com/search?q=Spe...i57j33i160.6783j0j15&sourceid=chrome&ie=UTF-8

The services that come up do indeed appear to be much more targeted than the limited therapy provided by ME/CFS specialist clinics designed for mild patients who can still work.

For example https://www.stgeorges.nhs.uk/service/neuro/neurorehabilitation/

The trust provides specialist neurorehabilitation to patients who require intensive therapy following acquired neurological conditions resulting in physical or psychological disabilities. This includes patients who have had strokes, traumatic injuries to the brain or spine, anoxic brain damage, diseases or infections of the nervous system, and long-term conditions like multiple sclerosis. Services are provided on an inpatient or day patient basis. We also provide a range of assessment and diagnostic clinics and advise on the care of patients at other treatment centres.

A comprehensive treatment service is provided by multi-disciplinary teams to address patients’ needs and maximise their recovery. The teams include nurses, occupational therapists, physiotherapists, social workers, speech and language therapists, a dietitian, medical staff and clinical neuropsychologists. The service also has consultants in neurology, stroke medicine, rehabilitation medicine, therapy, neuropsychiatry and clinical neuropsychology, as well as doctors in training. Visiting clinicians include pharmacists.

Our patients
Inpatients are admitted for individually tailored programmes based on goals set by the patient and their family or carers, in collaboration with the treating team. Close liaison is maintained with families, carers and community services, including statutory and voluntary organisations, to help patients’ progression from the inpatient setting to the home environment.

Day patient and outpatient services include individual and group cognitive rehabilitation and vocational rehabilitation to get people back to work. Support groups for patients and families are also available.

I think it also ties in with the recent discussion I have been having about ME and the new anticipated ABI guideline, which merely states rehabilitation services are already available for ME & LC. According to the RCP however, the rehab services are not specifically mentioned in the ME/CFS NICE Guideline.

 

[bobbler]

This post may be taking the current discussion slightly off track, but I didn't intend it to as my first immediate thought when reading the opinion piece was the RCP's refusal to champion the new guidelines has influenced such propaganda, so I thought I would check to see if they changed their position following the roundtable meeting as I hadn't followed up.

I think I googled 'Royal Collage of Physicians ME Guideline' which led to this page https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs

As I read through the web page I was drawn to the following paragraph.



So I searched 'Specialist rehabilitation medicine services NHS' and 'exercise medicine services NHS UK'

Here is what came up;

https://www.google.com/search?q=exercise+medicine+services+NHS+UK&rlz=1C5CHFA_enGB898GB898&sxsrf=APq-WBtrIj5V2HtYmcmqoCVjtbhaXTyITQ:1646367995227&ei=-5QhYsyrDY6fgQaW-JaIBQ&ved=0ahUKEwiMlZnczqv2AhWOT8AKHRa8BVEQ4dUDCA4&uact=5&oq=exercise+medicine+services+NHS+UK&gs_lcp=Cgdnd3Mtd2l6EAM6BwgjELADECc6BwgAEEcQsAM6BwgjELACECdKBAhBGABKBAhGGABQ8QhY-Rdgsh9oAXABeACAAUSIAe8BkgEBNJgBAKABAcgBCcABAQ&sclient=gws-wiz

https://www.google.com/search?q=Spe...i57j33i160.6783j0j15&sourceid=chrome&ie=UTF-8

The services that come up do indeed appear to be much more targeted than the limited therapy provided by ME/CFS specialist clinics designed for mild patients who can still work.

For example https://www.stgeorges.nhs.uk/service/neuro/neurorehabilitation/


I think it also ties in with the recent discussion I have been having about ME and the new anticipated ABI guideline, which merely states rehabilitation services are already available for ME & LC. According to the RCP however, the rehab services are not specifically mentioned in the ME/CFS NICE Guideline.

I'm hearing things like this. I'd say this is a thread in itself and is important - certainly needs a lot of looking into

 

[livinglighter]

I'm hearing things like this. I'd say this is a thread in itself and is important - certainly needs a lot of looking into

Agreed. I've asked for it to be moved. Next is finding out how straightforward it is to secure CCG funding.

 

[Jonathan Edwards]

I am a bit unclear as to what is being raised here.

Rehabilitation units exist, mostly for strokes and head injuries but the same units also see people with ME and give them exercises.

The Royal College of Physicians (actually Dr Turner-Stokes) has complained that the guideline does not mention rehab units specifically. This was raised at the round table, at which Dr T-S was present. In response to raising this a health care professional pointed out that there was no particular reason to involve rehab services, which are stretched dealing with strokes etc. and do not have any particular expertise. What matters is that the professionals managing PWME have an understanding of the evidence and follow the guideline. Since Dr T-S indicated in her BMJ piece that she didn't understand the evidence issues and didn't like the guidelines the other professional's point seemed to hit its mark.

Thus is all just about rehab physicians wanting more funding, nothing more - a distraction.

Personally I do not see that management of PWME has much to do with rehabilitation and if the attitudes expressed by rehabilitationists are anything to go by it should steer clear.

 

[bobbler]

I am a bit unclear as to what is being raised here.

Rehabilitation units exist, mostly for strokes and head injuries but the same units also see people with ME and give them exercises.

The Royal College of Physicians (actually Dr Turner-Stokes) has complained that the guideline does not mention rehab units specifically. This was raised at the round table, at which Dr T-S was present. In response to raising this a health care professional pointed out that there was no particular reason to involve rehab services, which are stretched dealing with strokes etc. and do not have any particular expertise. What matters is that the professionals managing PWME have an understanding of the evidence and follow the guideline. Since Dr T-S indicated in her BMJ piece that she didn't understand the evidence issues and didn't like the guidelines the other professional's point seemed to hit its mark.

Thus is all just about rehab physicians wanting more funding, nothing more - a distraction.

Personally I do not see that management of PWME has much to do with rehabilitation and if the attitudes expressed by rehabilitationists are anything to go by it should steer clear.

I may have misheard but something in passing/rumour seemed to be someone suggesting that where areas didn't have an ME/CFS service then people could ask to be referred to 'general' rehabby or brain injury type services. Given it seemed to be said as if it was a positive thing (don't know again whether I was getting wrong end of the stick) I thought maybe I had missed something on how it was positive/did a bit of a double-take on it.

It would be good to have some sort of eye out to see if people are getting suggested this in any areas or if the 'supply-side' in some areas might be thinking of/planning to say they are open to take on those with the condition. I also struggle to see where the benefit is from rehab for those with ME or feel reassured such an area would be open to understanding the condition.

I can see how the headway rehab is trying to make on long-covid could lead to the 'too' of ME/CFS being added by them as what they apparently cover.

I also note that there seems to be a pull between royal colleges doing their own guidelines for things vs Nice guidelines. I can see how them saying 'oh well there is a gap in services here but they can always go to the general rehab' becomes a problem that undercuts provision getting properly set-up to fill gaps. It would be like wrestling services out from being under the mental health dept for them to end up under the rehab dept

 

[livinglighter]

I acknowledge the significant improvements of the new guideline. Yet some services for patients with complex and very severe ME symptoms are not referred to within the guidelines as The Royal College of Physicians or Dr Turner-Stokes has pointed out.

Last month, I called a ME/CFS fatigue clinic to check which UK clinics prescribe and dispense medication, as some had done in the past to stabilise the condition. I was advised the clinics do not prescribe because the services are for patients who can self manage (mild-moderate). I was told the patient's condition is expected to be stable before attending. Furthermore, I was told I'm not considered a suitable candidate if my symptom severity is beyond the self-management techniques I had already received. The service said my GP needs to refer me to symptom-targeted specialised services such as a sleep clinic for sleep disorders.


NHS Scotland categorises ME/CFS as a CNS condition, as did Royal Free Hospital fatigue clinic, so I don't see why ME patients won't receive appropriate care within a specialist service like St. Georges's neuro-rehab, which caters to all CNS conditions, including brain injury patients with PEM and conditions that relapse and remit like MS.

https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/

https://www.nhsinform.scot/illnesse...-and-spinal-cord/chronic-fatigue-syndrome-cfs

I am happy to contact a few services to check if they care for ME/CFS patients.

 

[bobbler]

I acknowledge the significant improvements of the new guideline. Yet some services for patients with complex and very severe ME symptoms are not referred to with the guidelines as The Royal College of Physicians or Dr Turner-Stokes has pointed out.

Last month, I called a ME/CFS fatigue clinic to check which UK clinics prescribe and dispense medication, as some had done in the past to stabilise the condition. I was advised the clinics do not prescribe because the services are for patients who can self manage (mild-moderate). I was told the patient's condition is expected to be stable before attending. Furthermore, I was told I'm not considered a suitable candidate if my symptom severity is beyond the self-management techniques I had already received. The service said my GP needs to refer me to symptom-targeted specialised services such as a sleep clinic for sleep disorders.


NHS Scotland categorises ME/CFS as a CNS condition, as did Royal Free Hospital fatigue clinic, so I don't see why ME patients won't receive appropriate care within a specialist service like St. Georges's neuro-rehab, which caters to all CNS conditions, including brain injury patients with PEM and conditions that relapse and remit like MS.

https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/

https://www.nhsinform.scot/illnesse...-and-spinal-cord/chronic-fatigue-syndrome-cfs

I am happy to contact a few services to check if they care for ME/CFS patients.

That is interesting that what is being said is that the guidelines doesn't cover severe.

I have heard of a number of people in the last few months of individuals being sent to sleep clinics for 'hypersomnia' whether already diagnosed with ME/CFS or in the process of that happening ie getting sent there instead. I'm unaware that said sleep clinics are familiar with ME/CFS as a condition and had the gut feeling it would be treated in the 'generic' 'symptom' manner rather than linked to the systemic aspects ie if someone is trying to hold down a job whilst having ME and ending up with their weekends, evenings etc spent resting.

If they are 'up' with the illness then maybe great, but I do think one issue is a lack of oversight and 'separation' of data by silo meaning perhaps the individual's condition isn't put-together big picture, but also the 'learning and updating of knowledge' for ME and how it is managed doesn't come together. People with ME aren't normal people with a sleep disorder (generic sleep clinic), some pain (generic pain clinic), fatigue (we all know what happens there) - these things all interact and what might treat these in normal people might exacerbate the underlying issue and do a house of cards jobbie. I don't see any lynchpin noticing this in such an approach.

 

[livinglighter]

That is interesting that what is being said is that the guidelines doesn't cover severe.

The guideline does cover severe and very severe patients it just doesn't specifically refer to the specialist rehabilitation medicine services and exercise medicine services for their symptom management.

Privately I have seen two ME/CFS specialists who ran NHS fatigue clinics and secondary care consultants with awareness of the illness, including a neuroscientist and neuroendocrinologist, all individually citing dysfunction of the brain causing that majority of symptoms during my consultations. That means the information I've received from those specialising in managing the condition privately and within the NHS is consistent.

In my opinion, ME/CFS symptoms are no longer appearing to be unique. Maybe it's the unclear pathology of the symptoms making it seem so.

If just some of the following group of symptoms are well-documented as brain injury-related, to me, it makes sense for people who have sustained a form of brain/head injury to be experiencing them. These are not random symptoms that arise from nowhere.

• Sleep dysfunction incl. Insomnia, extreme drowsiness, mixed up sleep patterns, disrupted sleep phases.
• Light sensitivity.
• Cognitive difficulties.
• Brain fog.

During one of my private consultations, it was also explained to me that sometimes pwME can build exercise tolerance, but it must be through very slow, small and gradual activity increments. It would mean just staying in bed and only lifting your arms if that is all that can be done without triggering PEM. I actually found the advice alarming and dismissed what I was told based on never being able to avoid all activities to where I can focus on one a day. But I'd like to know if this is the type of exercise medicine provided for inpatients at specialist rehab centres.

At this stage, I'm not saying rehab centres without ME specialists are the best place for pwME at all. I'm just saying it is worth investigating, especially as it has been mentioned they already regularly care for people with the condition.

 

[Jonathan Edwards]

I acknowledge the significant improvements of the new guideline. Yet some services for patients with complex and very severe ME symptoms are not referred to with the guidelines as The Royal College of Physicians or Dr Turner-Stokes has pointed out.

I am not clear what 'services' (i.e treatments) you are referring to.

Dispensing drugs does not require a rehab unit. Moreover, there aren't any drugs specifically for ME. Sleep medicine units may provide a diagnosis service but I don't know what treatment they can offer.

There is no agreement on any brain pathology so there are no specific treatments available.

I would agree that it seems a good idea to have centres that might cater for very severe cases needing nursing care but that is more suited to hospice type management.

Maybe the rehab people know ways of making people better but so far they have given no indication of how. Dr Turner-Stokes clearly still believes that GET and CBT are useful and that the NICE evidence assessment was wrong. So if patients are referred to rehab units they are likely to be treated with GET or CBT, even if the name changes.

When the idea that rehab units had something special to offer was challenged at the round table all that came in response was bluster that 'we have lots of experience' or 'we have special expertise' - in other words ' we know GET and CBT work because we see them work'. Nothing could be less convincing.

Thee are units in the UK that care for ME that do not call themselves rehab units and agree that GET and CBT are inappropriate. Maybe it is time that areas without them set them up. As far as I can see as long as management is under rehab units the same old treatments will be assumed to be appropriate. Exercise is used as a treatment by rehab units for all sorts of neurological disorder and I strongly suspect that it is as unfounded as it is for ME.

 

[livinglighter]

It’s best to stick with symptom management described in the current guideline if the rehab centres are will end up providing dangerous GET.

Hopefully GP’s will use the expertise of ME specialists to do so. My own GP doesn’t have a clue on how to manage my symptoms, but without agreed pathology I can’t understand how anyone will. Perhaps those dispensing are taking an experimental approach in managing ME caused symptoms.

 

[livinglighter]

There is no agreement on any brain pathology

I know, but the brain is being mentioned amongst ME practitioners.

Recently someone else was signposted to a brain injury charity after requesting a NICE recommended ME/CFS management plan at the fatigue clinic.

Had my last phone appointment with Liverpool MECFS clinic.

The situation for anyone in their large catchment: Liverpool only deals with mild-mild/mod.

After quoting NICE to OT who was bewildered about a ‘care plan’ the manager takes me on and writes letter (no care plan) to my GP.

Referred to The Brain Charity but looking like they will offer counselling only.

Told come back only if you want to accept the three seminars.

I never expected medical treatment but had to jump through hoops for my GP. I’m waiting to see how he responds.

Website poor and still tells GP about GET, webpages under construction since last summer.

https://www.rlbuht.nhs.uk/departmen...s-cfsme/information-for-health-professionals/

 

[Fizzlou]

Recently someone else was signposted to a brain injury charity after requesting a NICE recommended ME/CFS management plan at the fatigue clinic.

Yes I am still waiting The Brain Charity in Liverpool to contact me.

This isn’t about any therapy but I guess to divert pwME away from Liverpool MECFS clinic with it’s poorly funded resources. Liverpool MECFS website claims funding is the reason they don’t cater for more severe patients.

The Brain Charity help with advocacy and counselling. No treatment but pleased that they specifically support pwME. Will let you know what happens.


PS
I contacted ForwardME to update them on current procedure at Liverpool plus the poor websites still trying to link to 2007 NICE guidelines and GET.

 

[Jonathan Edwards]

After quoting NICE to OT who was bewildered about a ‘care plan’ the manager takes me on and writes letter (no care plan) to my GP.

Referred to The Brain Charity but looking like they will offer counselling only.

Told come back only if you want to accept the three seminars.

I never expected medical treatment but had to jump through hoops for my GP. I’m waiting to see how he responds.

This looks like an illustration of just how disorganised things may be if someone sensible is not already in place. I think Liverpool is where the service was very BPS based so maybe they have lost the plot completely.

I have some sympathy with there being no care plan in the sense that nobody knows what care to give and the talk about devising a 'care plan' in the guideline looks to me a bit airy fairy.

But the most useful thing might be support in terms of what might be called counselling and that ought to be provided by the service, not fobbed off to a charity. Who knows whether the charity uses people who know what they are doing or audits their care? They might turn out to have some very useful people to help but it makes a bit of a mockery out of trying to devise evidence-based guidelines.

 

[Jonathan Edwards]

It seems pretty bizarre that a service for an illness should say it cannot deal with severe cases! It is a bit like a surgical service saying they are happy to see patients but they don't do operations.

Maybe the proposals on implementation from NICE will make things a bit clearer, maybe not.

 

[Fizzlou]

https://www.rlbuht.nhs.uk/departmen...litis-cfsme/frequently-asked-questions-cfsme/

@Jonathan Edwards

I have written to ForwardME but here’s the FAQ which includes links about GET plus not catering for severe ME. Pages have been under construction for months.

 

[livinglighter]

This isn’t about any therapy but I guess to divert pwME away from Liverpool MECFS clinic with it’s poorly funded resources. Liverpool MECFS website claims funding is the reason they don’t cater for more severe patients.

It does look like most CCGs still only fund ME/CFS specialist services to carry out self-management techniques for mild-moderate patients.


https://www.birminghamandsolihullccg.nhs.uk/your-health/treatment-policies/chronic-fatigue-syndrome#:~:text=Chronic fatigue syndrome (CFS) is,to it as CFS/ME.


Hopefully, that will change once when they adopt the new guideline. Until then perhaps GPs can check what other services are available for 'exceptional circumstances' to see if they will be of any use.

 

[Trish]

I think care plans are important for people with severe and very severe ME. They can include vital info on who to contact for help with particular problems such as eating, plans for regular reviews and who will do them and where (at home), stuff about and for carers for personal care, any medications for things like sleep and nausea etc.

 

[livinglighter]

I think care plans are important for people with severe and very severe ME. They can include vital info on who to contact for help with particular problems such as eating, plans for regular reviews and who will do them and where (at home), stuff about and for carers for personal care, any medications for things like sleep and nausea etc.

Perhaps it's a way for fatigue clinics to wiggle out of providing a care plan. It might be argued that mild-moderate and stable patients do not have the needs required.

I think gaining clarity of all service provisions CCGs can fund is fundamental in putting the guideline into practice for non-mild/mod patients. Even if it takes place in a neuro rehab centre, don't they have to follow the ME/CFS guidelines as well, so we can reject GET if they offer it? Even so, I would think inpatient activity management, where you might raise your hands once while lying in a bed all day, is very different from carrying out the yoga moves I was given at the fatigue clinic by a trainee physio.

I know I keep bringing up brain injury, but for comparison purposes, there are different service levels. Community-based for mild patients who can self-manage, community outreach where stable patients can be accessed at the home, hospital or in the gym, and hospital-based rehab for unstable bed patients. Could even be more. A long time ago, one inpatient facility was devised for severe ME patients, which got closed down in 2011 and might reflect the different levels of care services also needed for ME/CFS.

https://meassociation.org.uk/2011/0...s-is-total-unnacceptable-says-me-association/

 

[Jonathan Edwards]

Even if it takes place in a neuro rehab centre don't they have to follow the ME/CFS guidelines as well and therefore we can reject GET?

The problem is that professionals working in rehab units have a belief that exercise is good for everything. If following the ME/CFS guidelines means anything useful it is being pragmatic and advising people on the basis of experience gathered from patients without any beliefs about exercise. As long as professionals retain these beliefs there is no chance of them offering anything intelligent as far as I can see.

Rehab units are designed to process patients like a sausage machine with a fixed period of rehab intervention. I don't see that as even relevant. What would they do? Anything worth doing can be done at home or in conversations in a clinic on a regular basis over a long period.

The reason for having brain injury patients in a rehab unit is to provide help with re-learning motor skills, which is supposed to be helped by expert physio input and probably is. If you lose the use of your right hand and have to learn to do everything with the left hand it probably helps to have intensive tuition. Nothing like that applies to ME beyond simple techniques like transferring from bed to chair, which can be taught on a domiciliary basis or in a physio gym unit.

 

[Jonathan Edwards]

I think care plans are important for people with severe and very severe ME.

I am in two minds about this. I agree with what you are saying. On the other hand my experience of 'care plans' is that they are used to dump the responsibility on the patient. There was a care plan for my wife when she was ill which just meant that I had to spend hours trying to contact different people to get the simplest things done. When I looked after people with complicated chronic disabling illnesses there was no cure plan other than 'if you have a problem ring Caroline (my secretary)'. I knew from ringing myself that Caroline was always there to answer and took messages very efficiently. By the end of the day I would have sorted out whether a clinic visit the next day or a domiciliary visit or a prescription or whatever was needed. Every problem is different and no care plan can cover anything unexpected.

In a system where nothing works a care plan might at least provide instructions for finding somebody but if there is nobody there it doesn't help much. The care plan for my wife was that I should ring at 10.00 if I needed someone to come to look after her that day. But every day was the same and to be any use someone would have needed to be there at 7.45. So I took compassionate leave and looked after her on my own. The support workers seemed to be oblivious to the fact that the system made no sense.