A thread on what people with ME/CFS need in the way of service

[Evergreen]

Good points. I will do some more tweaking.

Oh good, because I think my brain might be done for the day! FYI I just edited to add this:

The latter option would require assuming that the harms reported by patients were due to how therapy was implemented rather than the content of the therapy - arguably not a safe assumption.

 

[Nightsong]

(Haven't been able to read through all the thread, so apologies if any of this has been raised already.)

I'd rework (10) a little. A lot of medications used for sleep, pain, headache disorders are technically prescribed off-label - even if there is trial evidence for them it may not be the licenced indication. I understand why you've grouped the two together into a generic unevidenced recommendations section rather than splitting out one prohibiting psychobehavioural interventions and the other limiting the use of pharmaceuticals to the relief of specific symptoms such as headache, sleep disturbance or pain and to trials - but a complete prohibition of all off-label prescribing for all symptoms would be very limiting.

2-3 weeks isn't going to be seen as credible. For routine outpatient referrals I think the only patients who will reliably get these days that are those on urgent cancer referral pathways (the "two-week rule" cases).

Some kind of protocol around environmental modification & priority access to side rooms might be seen as more feasible than dedicated beds, although the latter are really needed.

"ME/CF" should be "ME/CFS".

Obviously the recommendations cut right across the current policy objective to farm everything out to "multidisciplinary teams" in "the community". Perhaps expand on the rationale for this - it may also be worth specifying roles for GPs & others.

From what I have been able to glean NHS commissioning now has a particular focus on outcome metrics, KPIs, PROMS etc. I think you might end up having to at least define some measurable outputs if the goal is to produce something that will survive contact with commissioners rather than just being dismissed as a piece of advocacy. I think it would be well worth trying to find someone with detailed experience of NHS commissioning processes to advise.

Thanks for doing this. It has been needed for a very long time. (I suggested something similar last year!)

 

[Kitty]

Now that I think about it, care shold probably only be based on the individual's own experience of how much they can do without running in to problems.

In my mind, that's always been the case. It's very individual.

The 'education about PEM' is really only introducing people to the concept. It's all-nigh impossible to unpick patterns when you're very ill and have severe brain fog. I lived through years of illness without it occurring to me that I might be feeling so terrible today because of activities I did 48 hours ago. My ability to reduce the symptom burden improved so much after I read Charles Shepherd's book.

 

[Jonathan Edwards]

I read Charles Shepherd's book.

Is that the purple book?

 

[Robert 1973]

As this thread is getting long I’m thinking it might be useful if the latest draft was added to the first post and updated when changes are made, along with the date of last edit.

 

[Jonathan Edwards]

Done

 

[Evergreen]

Is that the purple book?

Maybe his "Living with M.E." book? Still widely available.

 

[Jonathan Edwards]

I have put my most recent suggestion on the first post.
I have tried to respond to all the comments.
I may re-work the rationale for hospital based service a bit more.

 

[MeSci]

I’ve read multiple stories of patients being held in hospital while for example antihistamines were withheld from them. This can seriously harm ability to get the nutrition needed and cause a flare up of symptoms. So it should at least include a clause of continuation of formerly effective treatment even if off label. Staff there love to go: “let’s first stop all your medication and see if that fixes things” in my experience which can cause real and immediate harm.

Yes - on previous hospital stays staff have removed all my medications from me, including desmopressin, which I really really needed (until removal of a rotten tooth stopped the polyuria). So I got very little sleep, as I had to keep getting up to urinate. I was also denied my antihistamine sleep aids, and one night I had to wait until 0300 to be prescribed a horribly-strong sleeping tablet, only to be woken when I was fast asleep by a doctor visit.

 

[Robert 1973]

I have put my most recent suggestion on the first post.
I have tried to respond to all the comments.
I may re-work the rationale for hospital based service a bit more.

If it’s not too long, please could you copy and paste it into the same post? Easier to quote but and easier for me to read on my phone

 

[Kitty]

Is that the purple book?

No, Living with ME as @Evergreen suggested. Can't remember much about it now (read it more than 25 years ago), only that it explained some things I was struggling to make sense of. I also read a book the late Dr Anne Macintyre wrote.

 

[MeSci]

If it’s not too long, please could you copy and paste it into the same post? Easier to quote but and easier for me to read on my phone

Yes - I can't find a program to read it in!

 

[Kitty]

ME/CFS care may have more in common with long term disabling neurological and atatological diseases.

Looking good. Think there's a typo in para 4 of the background section, but otherwise it reads very well.

 

[Peter T]

This service model is a valuable conclusion of some seven or more years of discussion here.

It is interesting to think how much this is a UK proposal and what a non country specific version might look like, a draft that could be adapted by others to suit their local needs.

Obviously it is in striking contrast to current UK provision that grew out specialist therapist lead rehabilitation units initially set up to largely deliver CBT and GET. These units have inadequately adapted to changing understanding of ME/CFS and failed to understand how they have fallen short in meeting their patients’ needs. Such services will be resistant to this approach as will the BPS ‘great and the good’, however I look forward to the response of the wider patient community and health providers in general.

 

[Jonathan Edwards]

This service model is a valuable conclusion of some seven or more years of discussion here.

It is interesting to think how much this is a UK proposal and what a non country specific version might look like, a draft that could be adapted by others to suit their local needs.

Obviously it is in striking contrast to current UK provision that grew out specialist therapist lead rehabilitation units initially set up to largely deliver CBT and GET. These units have inadequately adapted to changing understanding of ME/CFS and failed to understand how they have fallen short in meeting their patients’ needs. Such services will be resistant to this approach as will the BPS ‘great and the good’, however I look forward to the response of the wider patient community and health providers in general.

Thanks, and yes, that is how I see it.
I think there will be major resistance from a DHSC committed to a primary care emphasis in addition to the specific vested interests.

An unknown for me is how advocacy groups and charities will view it. Some might argue that we should not get rid of current services if that means new patients have less 'support' - I guess in terms of attention. I don't think there is any need to take away attention and validation but I sense a concern that doing away with current therapist teams may leave a vacuum. I also think that some within advocacy organisations have not seen the implications of dividing off ME/CFS from all other 'real diseases' and sending it to community units (because it still is not seen as a real disease).

 

[Kitty]

Some might argue that we should not get rid of current services if that means new patients have less 'support' - I guess in terms of attention.

There might be a problem if GPs don't offer diagnosis in some regions. A member here has spoken of their frustration at having to wait months for an appointment at a long Covid clinic to get a diagnosis, which their GP either couldn't or wouldn't offer. I don't know whether the same goes for ME/CFS, but it would seem likely.

Presumably that's a decision made by the local health board, though, which could be changed.

 

[Jonathan Edwards]

There might be a problem if GPs don't offer diagnosis in some regions. A member here has spoken of their frustration at having to wait months for an appointment at a long Covid clinic to get a diagnosis, which their GP either couldn't or wouldn't offer. I don't know whether the same goes for ME/CFS, but it would seem likely.

I don't see any problem with a GP making a provisional, or definitive, diagnosis. The suggested model is for a referral service for people who need one. It wouldn't preclude a GP managing the problem if they were confident in doing so. It would just mean that if the person was referred on it would be to someone with expertise rather than for therapping.

I don't see any reason why referral to a physician should take longer than referral to a rehab centre. It is probably quicker in most situations. I think it makes sense to suggest a model with less personnel and maybe that means less interaction time but the BACME Guide seems to want lengthy time wasting on unnecessary assessments and planning sessions (without saying what for) and it would be cheaper to avoid that. Fewer staff interactions should mean cheaper and therefore scope for more sessions and shorter waits.

 

[Peter T]

There might be a problem if GPs don't offer diagnosis in some regions. A member here has spoken of their frustration at having to wait months for an appointment at a long Covid clinic to get a diagnosis, which their GP either couldn't or wouldn't offer. I don't know whether the same goes for ME/CFS, but it would seem likely.

Presumably that's a decision made by the local health board, though, which could be changed.

Many of the UK specialist services don’t offer a diagnostic service, but only accept referrals once the diagnosis has been made.

 

[Sly Saint]

if GPs don't offer diagnosis in some regions.

Maybe basic screening/ blood tests etc and official diagnosis should be the initial 'job' of any 'specialist' service, like for MS.

 

[Kitty]

I don't see any problem with a GP making a provisional, or definitive, diagnosis.

Oh, I agree. It would be preferable, GPs are better placed to spot potential alternative diagnoses than clinicians who're only trained on ME/CFS/long Covid.

Perhaps I should have included more in the quote—I was referring to what you said about possible negative responses by advocacy groups and charities to the withdrawal of the current clinics.