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

I am getting a bit confused between your own plans and discussion of policy.

The hope is that practices will change with the new NICE guideline. The guideline suggests care should occur in the sort of environment we call a fatigue clinic rather than a rehab unit. Although at the round table it was agreed that rehab professionals should be mentioned in the guideline it was with lack of enthusiasm.

The neurological approach to ME has in general been either that there is nothing wrong, because there is nothing to find on neurological examination, or that the problem is 'functional' implying psychosomatic. The few enlightened ME practitioners have tended not to be neurologists.

The neurorehab view is much the same plus the insistence that exercise therapy is what is needed. The chief spokesperson for the rehab sector has Mae it clear that she does not think the new guideline is correct and that GET and CBT should continue.

Moreover, even the physios who have an understanding of ME claim that patients after head injury get better with exercise. So GET is still absolutely on the menu for head injury.

 

Peter White....... Professor White

 

That is what I was expecting to take place. But that's not the current feedback. I think the CGGs need to work out fatigue clinic service provision.

In the meantime, I have been told by an ME expert that some patients can build up tolerance to physical activity but they must first be bought down to their baseline level which causes no symptoms. For some that might mean just laying in a bed. The prescribed amount of activity may be just moving your arms if that doesn't cause symptoms. I want to know if that is something I can do within an inpatient rehab centre. Otherwise, I will probably never know if the expert advice will work for me. They may not offer something of this nature but I am willing to find out because I am currently overexerting myself daily inside my house.

Hopefully my GP can liaise with the ME expert and see if the rehab service can carry it out. Like I said, if I get there and the plan is for me to carry out HIIT lessons I'll see myself out.

 

Defo want to find something that works. Admittedly it does sound similar to GET, but my specialist also suggests all activities to be done under a heart rate of 100, etc. So I'll compare techniques.

I'll try to find out if what they offer is in line with my specialist's suggestions before seriously considering attending. I'll also try to find accounts of pwME who've attended like the RCP mentioned.

 

Sorry ! Ours had a low patient tariff ( £450 per annum) whereas Prof Peter White, Barts London ME Specialist clinic was high tariff ( of £4500).

 

I think of all the places in the world i would be terrified to go, a neurorehab unit would only come second to a psych unit. I would be shocked to discover they understand anything about ME. And They would be at least, if not even more likely, to prescribe incremental increases in activity after finding a baseline, than a fatigue clinic, with quite likely a lot less sympathy to boot.

I hope your experience proves me wrong.

 

I'm intrigued, because everyone is different with this illness. For me the closest 'easily communicated' analogy I can think of is the idea of an untreated diabetic - which at least feels like it covers the biochemistry/fuel pipe issue that underlies a lot of what we can't do. They would never consider not treating the diabetes first before - even if they do find a baseline - seeking to force the rest of their body to try and regain the functions said individual could do before getting ill. You simply aren't going to get able to consistently run around and stand whilst your diabetes is untreated, and looking at someone's arm and whether they can lift it one day isn't much of an indicator of overall progress because they could be getting sicker and sicker due to it.

I also often think of using the terms 'central' and 'local' as useful because they both interact but few medics seem to look at both at the same time. It's also why I have concern about research nailing understanding PEM - and its physiological indicators (given there are different 'timings' for all) 'early on' in research strategy. I note that a muscle area can 'empty' and give immediate feedback by shaking and being unusable for a long time (or also have PEM), whilst at the same time that can then contribute to central PEM which hits a day or two later.

I haven't noticed it being a condition where 'local' parts degrade differently to the 'central' severity ie someone gets arm-lifting issues whlst mild everywhere else. BUt, and this really is me riffing with little expertise, when you note the people e.g. in the parliamentary debate, who were put in a wheelchair by GET (which seems to focus on leg-based activities such as walking), and add it to what we know about exertion reducing ability of muscles to uptake glucose and oxygen etc you wonder whether enforcing 'local' stuff in the wrong way can also cause increased localised issues above 'central' severity.

There are still so many big questions (particularly the ones that demonstrate the issues across people) some of which are genuine puzzles, others really don't seem that far-off/hard to answer and check if things were funded to the right people.

I can understand the feeling of desperation with the illness, particularly if you are in a home situation where it isn't restful to the extent severe ME needs and there is the feeling of obligations that you can't but need to get well to fulfill. How long have you been ill like this (to the extent you describe where you are talking of rehab to lift your arm) if you don't mind me asking?

 

I think a what in the name was appropriate.

 

I can understanding wanting to get better & improve your functioning. I would just caution that neuro-rehab is known to be intensive, because of the nature of the conditions they work with, eg stroke etc - where they have a narrow window to try to get physio done, and the patients can tolerate, and actually do *need* intensive physio. My mum trained as a physio and said the same thing. I also just find it unlikely that a neuro rehab centre would truly understand PEM as it’s not commonly what they see (as the majority of patients with TBI don’t have PEM), when even the NHS ME/CFS clinics, which are supposed to be entirely dedicated to helping people with PEM, don’t properly acknowledge or understand PEM?! The other thing is without an understanding of PEM, there is a real danger of being pushed too far - with ME, you may not even know your own limits, as there’s no rules to tell you what your limits are at any one time. Also, being an inpatient means all of these things would be amplified even more.

When I actually did need physio, I was also told by a physio very knowledgeable about ME, that neuro-rehab inpatient facilities would be the worst possible place for me to go. In the end, being at home & doing things very slowly (cancelling appts whenever I needed to, going super slowly etc), made all the difference..with even doctors being amazed at the progress I had made.. just like the “tortoise and the hare” story.

I’m just wondering, have you considered contacting some of the ME organisations / charities that can help people with pacing and the sorts of activities that can be helpful, while staying within your envelope - and how to slowly and safely increase activity IF you feel you are able to, such as the ME trust & the Yorkshire fatigue clinic? They don’t only help people with ME (well the YFC don’t, they help people with any fatiguing condition), but importantly they understand PEM and have a lot of experience with PEM.

 

In this case, the arm raising exercise isn't to do with the degradation of body parts. It's to do with a lowered anaerobic threshold (AT) associated with symptom exacerbation/condition trajectory deterioration, which is a theory said to be a present part of ME/CFS. Hence, some ME practitioners advise pacing with a heart rate (HR) monitor to avoid PEM. Physios for ME explain it a lot better than I can, but when wearing an HR monitor the idea is to keep it under a certain number that corresponds with your lowered AT. Staying within your safe AT zone becomes almost impossible the more severe you are and that is said to be the part/cause of constant/rolling PEM. In severe patients, the theory is the AT is so low that slight movements cause you to exert yourself beyond it. So the idea for those who can is to reduce all activity to your AT that doesn't cause symptoms, which might be laying in bed only, then raising your arms - which might cause you to go slightly beyond your AT. Whatever the movement, it must only cause you to go "ever so slightly" beyond your AT. The exercise is done to improve the impaired AT thus increasing tolerance for activities.

What is also interesting is there is a similar sounding technique called The Buffalo Concussion Test developed for post-concussion syndrome (PCS) patients. I'm just looking into it so can't say much more about it other than it is used for PCS patients to exercise without causing PEM.

I've always been able to do a lot physically with pacing. It's only recently I've started to get PEM more frequently following activity I could do without triggering it as much. For some time now, I've been able to monitor my lowered ability to stay within my AT with each relapse. It seems to correspond with my overall condition severity. I understand each doctor has their own take on ME/CFS, but I trust my ME specialist's advice. They're also one of the 'good guys' within this field, with some of the most patient experience. They are not an advocate for GET that's for sure. The HR monitoring is probably one of the most helpful techniques given to me for managing my symptoms. My problem is my ability and desire to achieve things that cause me to overexert myself.

 

Along with everyone else you have raised very important points. For now, I'd like to find out how patients with PEM are treated, which may indicate their level of understanding. I think PEM is likely different across various conditions, so I wouldn't be surprised if there really isn't a good understanding of PEM associated with ME/CFS. I'm only interested in finding out due to the RCP's statement about severe patients missing out and I don't think fatigue clinic is the right place for me anymore.

Thanks for the info. I'm going to speak to my GP and request she looks into what a rehab centre will entail. But to be honest, the ME specialist didn't mention it at all, so I also think the idea of it helping is farfetched.

I think I need to leave my home to be able to stay within my envelope as there is so much going on, but I'll contact the ME Trust to see what they'll suggest.

 

I totally relate to that last line - which is why when I read the few 'anonymous case studies' that have been put in journals etc in the last few years, and they sound written in a certain way and talk of 'not being motivated', unmotivated, or lack of motivation (apparently said by the individual as a 'before') I smell a massive rat.

Now that you've made even more clear about the 'but the issue is how do you get under your baseline when it is so low' I also totally relate.

So you are looking for somewhere that focuses on the recuperation/low base bit first, rather than the 'what can you do at your best with this one body part, how can we rehab you to do more'?

I get the 'trying to get under your baseline' bit - just worry about whether there are many places at all that get that at all. If you are well-positioned enough to feel safe having a look-see and be able to walk away and report on it then I can see that.

 

Exactly, the theory doesn't add up. A lot of ME patients have participated in their own deterioration due to working, plus caring for themselves and family. That's motivation right there and activity. Deconditioning how? I was/am more active than my parents who've been driving everywhere for the last 40 years and do not suffer 'deconditioning' symptoms.

Can only do that with complete bed rest if your condition hasn't even surpassed that, like with those who are very severely affected. There are a few reported cases of those who were able to recover somewhat from moving back home and having a huge amount of support during the early stages of their illness.

I expect the new ME/CFS guideline to apply within an inpatient rehab centre. I think it mentions somewhere how the baseline should be determined. CCGs do fund inpatient rehabs it just says not to refer routinely or only in 'exceptional circumstances' to deter funding applications. But more importantly, right now, is finding out what care the CGGs fund within an inpatient rehab setting.

I'm going to try to get some answers. I'm 80/20 about what the feedback might be as one of the most helpful ME practitioners I had was a Neurophysiothrepist. The disability letters they provided me with are CNS and Immune pathology-based. I've recently become aware that it may be because;

1) I can see in my notes NHS England classes ME as a CNS condition just like NHS Scotland does.
2) Neurophysiothrepists are usually based within Neuro rehab centres that regularly treat CNS condition patients.
3)TBIs can also trigger an immune response.

https://www.brainresearchuk.org.uk/...y-the-role-of-the-immune-response-david-menon

 

The link is very interesting. That is great if you can find someone who is in a position to investigate this way and curious about it, and if your history is such you sort of know there is something to find/where to look or who for etc.

 

I've just found out Long Covid patients are being treated at the sports medicine centres.

You couldn't make this up.

 

There have long been consistent reports of highly active individuals demonstrating persistent symptoms many weeks, or even months, and several years after various initial infections.