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

Trips to a clinic are not possible for severe and very severe patients. We need in house and bed medical visits and care from ME/CFS specialists who already know the drill (no clanking keys, no smells and understand the disease). But honestly since at the moment nothing has been approved for us what use would they even be? The only use I can see right now is they can get feeding tubes fitted for those starving to death and ensure it can be run from home.
 
1. Physician-led service (not rehab or psychiatry)

2. Specialist nurses.

3. Domiciliary service.

4. Inpatient facilities for severe and very severe.

5. Regular follow-ups.

6. Links to research institutions.

7. Honest evidence based management advice and prognosis.

8. No unevidenced therapies.

9. Access to psychological support (ie well informed counselling) if needed.

10. Access to well-informed OTs for home adaptation advice etc if needed.
 
What would the assessment accomplish? Disability services, perhaps? It seems that some patients come out emotionally worse off after doctor visit. Unless there is a clear upside, I wouldn't see a doctor.
The clear upside is the finding of an another condition that explains the symptoms, ideally one that can be treated. To do that, there needs to be a serious effort at a diagnostic process. If you are going to put someone in the ME/CFS bucket, with the huge personal and societal cost that comes with someone having a long term disability, they, their family and society deserve a careful diagnostic process.

Even if no alternative diagnosis is found, just knowing that the process was done well is a major comfort to someone with ME/CFS symptoms. It can limit the constant wondering about other diagnoses and the expensive doctor shopping and vulnerability to the quackery that seems to offer answers.

There also needs to be a periodic review to assess for new symptoms and to reconsider the diagnosis.
 
Trips to a clinic are not possible for severe and very severe patients. We need in house and bed medical visits and care from ME/CFS specialists who already know the drill (no clanking keys, no smells and understand the disease). But honestly since at the moment nothing has been approved for us what use would they even be? The only use I can see right now is they can get feeding tubes fitted for those starving to death and ensure it can be run from home.
I think it would be good to get home visits from doctors and nurses who can look for any other conditions that might have been missed due to negligence on the part of GPs etc.
 
1. Physician-led service (not rehab or psychiatry)
2. Specialist nurses.
3. Domiciliary service.
4. Inpatient facilities for severe and very severe.
5. Regular follow-ups.
6. Links to research institutions.
7. Honest evidence based management advice and prognosis.
8. No unevidenced therapies.
9. Access to psychological support (ie well informed counselling) if needed.
10. Access to well-informed OTs for home adaptation advice etc if needed.

8. No unevidenced therapies >> except when part of a well designed trial

As well as links to research institutions, I think there should be links with good patient charities. The charity can inform the clinic and the clinic can inform the charity. We see that happening with MS clinics and charities. In a lot of countries, realistically it will be the charities providing a lot of care, setting up biobanks and patient registries, enabling peer support... A government funded clinic can achieve so much more if it has a productive relationship with a good quality charity.
 
There also needs to be a periodic review to assess for new symptoms and to reconsider the diagnosis.
Yes but no only that. We need physicians and nurses to build up knowledge which can only be acquired by observing patients at intervals over a prolonged period of time. And we need data from follow-ups to be recorded and made openly available to researchers.
 
I had the experience of two ME clinic referrals post-Covid.
One required in-person attendance (including for bloods and urine samples) one I saw online only.

My first thoughts on a service is that there are fairly standard things to be checked, could these be agreed upon (am guessing bloods, weight, bp, etc) so there’s an agreed list. Then can these be done without attendance?

For example my weight and BP were done at the chemists last time (had to get my flu jab there, but worked out handy they could check and record these on my NHS record as the chemist is nearer and quicker than my GP).
Bloods - I have the community phlebotomist. I am very lucky. But I have a BP cuff and I’ll do that for a few days if the GP wants an update, they seem to find that acceptable. I do videos of my weight for my Wegovy jabs, the prescriber is happy to accept those.

Assuming there are ways to minimise the effort of gathering the data needed for/by referral to the “ME clinic” everything after that could be done via teams video call.

I just keep thinking “less is more” it applies to both
1. Bombarding us with courses, diaries and unevidenced “treatment” and implication that we can recover, we can build up to doing more, achieving goals. Less of that guff. Just bare facts.

2. What we actually should be doing to help ourselves. We need to do less, now. We need more of that message.
 
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For people newly diagnosed, it'd be good if they or their caregivers got some really good understandable information about what ME/CFS is and where the science is.

Basically, a patient should be able to quickly learn the things in the S4ME fact sheets, and not have to spend years with misconceptions that lead to false hope, trying random supplements, trying to exercise their way out of it, etc.
 
  • Education and support of carers and close family.

I’m not able to put into words how much damage and strain the quacks on both sides have put on my family and my relationships with them. We need someone to educate them and tell them with authority that you just have to try to cope, and that hope of substantial improvements has to be based on being lucky with time or research breakthrough. And to stop intrusive paternalistic minmaxing and surveillance of every aspect of our lives.
 
4. Inpatient facilities for severe and very severe.

I don't think this will ever happen. In any country, ever. The sheer cost of that for the government would be unbearable so shifting that weight to relatives and quite unfortunately, letting people perish from the lack of care they need is what anyone in position of power will choose 100% of the time.

But it would be nice to imagine a sound-proofed, dark facility with 24/7 care tailored to everyone's needs. Last time I was in the hospital my carer had to bring a rice cooker, rice and quinoa and prepare me food in the room because the hospital literally doesn't expect people being only able to eat a limited diet.
 
  • Education and support of carers and close family.

Yes, and also a willing to advocate for their patients on a number of levels.

Certainly, with the person's family and school and work. The only useful thing that my son got from attending a paediatric fatigue clinic was a letter to his school saying that he had ME/CFS and would need some accommodations. The most useful thing that a GP did for my son was to phone up a school administrator who was giving my son a hard time about attendance and give her a good talking to.

But also being willing to talk with media and with hospital authorities and policy makers including medical societies and medical training facilities about what their patients need.
 
intrusive paternalistic minmaxing and surveillance of every aspect of our lives
Yes I hate that stuff
For people newly diagnosed, it'd be good if they or their caregivers got some really good understandable information about what ME/CFS is and where the science is.

Basically, a patient should be able to quickly learn the things in the S4ME fact sheets, and not have to spend years with misconceptions that lead to false hope, trying random supplements, trying to exercise their way out of it, etc.
Yep if partner and I had had this information when we first got sick our lives would look completely different. People need to have the right information soon after onset or things can rapidly go wrong.
 
I don't think this will ever happen. In any country, ever. The sheer cost of that for the government would be unbearable so shifting that weight to relatives and quite unfortunately, letting people perish from the lack of care they need is what anyone in position of power will choose 100% of the time.

But it would be nice to imagine a sound-proofed, dark facility with 24/7 care tailored to everyone's needs. Last time I was in the hospital my carer had to bring a rice cooker, rice and quinoa and prepare me food in the room because the hospital literally doesn't expect people being only able to eat a limited diet.
I don't know what terms these different things come under/of the system so bear with me.

But there are also 2 aspects to this.

The idea of a 'dedicated inpatient facility' vs it seems from hearing them described in different articles or whatnot that if someone ends up in hospital there are wards that in an ideal ward mean someone ends up on the ward that 'covers that area' even if said ward isn't dedicated to/just for x.

And at the moment throughout the system there is no place existing to put people - putting aside the whole needing side room thing (that I guess could come with 'attaching' that responsibility to a particular ward and then resources they need to cover what traffic might come into them and the different needs).

And no staff/place where anyone might be at all trained or familiar and so get responsibility for overall management and saying 'yes that's what they need' rather than lots of people with different theories guessing or arguing in meetings or 'group-thinking' by it being 'multi-disciplinary' as if 'more people who don't know about ME/CFS put together in a group = more knowledge of ME/CFS'

I've also heard of clinics having, there is a term for it that isn't coming to me, responsibility for 'being the person called if someone on any ward comes in with it, but broke their leg, maybe developed a comorbidity or has something more related like feeding issues' (and said person needs to obviously have options to hand to be able to implement those things albeit whether they are 'adjustments' to std processes/side room or 'treatment')

It would be useful if that same (term I can't think of - something like 'outposting'?) could work for eg someone who was a nurse or OT being able to more directly sort the systems that aren't set up for our type of illness in their assessments (and where the assessments involve a level of health many don't have), like 'liaising' but with a bit more power for things like equipment etc. so that processes can be made to match (without involving that patient to have to unwittingly take on that 'making it match' by being the 'first we've seen who is ill enough to need that')

And that's partly because that is sort of 2-way in informing the HCP of how the disability is going and because of the idea that without adjusting life someone will get worse due to how ME/CFS works as well as because of 'not being able to access x, do y task'. Having that reporting of successful sorting of environment and equipment at home or at work (and include adjustments there) is sort of useful to contextualise if someone is getting better or worse medically/health-wise.,

And because accessing it in itself becoming a 'workload to the patient' and because of the nature of the illness and how ill we are in ways that aren't understood there being a believability issue (when not thru medical confirmation but a patient trying to say they need vs want) and a 'this takes longer than the time alotted/whats needed isn't fitting what we offer' (both in appointment having enough time to understand an issue they don't realise is 'more than fatigue', unusual issues like bartering one symptom/issue vs another - and not sounding 'marioantoinette', and in what they are allowed to offer on what basis 'fitting' with behind the scenes inaccurate descriptors etc sort of need that 'expert sign-off' but also the patient having someone who can think of these ME/CFS specific things helping them too - it is hard thinking of what it is we will deal with in different situations, what might help vs hinder then relating it to things, whether off-the-shelf or custom) something only possible if they have support that can be trusted and have the knowledge (both of the illness and where it heads, and of how that particular services system works) to get through said system as that workload in itself affects a patients health and gives them an invidious choice (is it worth making oneself more ill doing said work to get x which if quick might help long term, but might end up never getting it therefore just = 'wasted work')

I agree with @Hutan that this is where the interaction with other 'providers' like the odd very good charity set-up might be where this sort of thing is normally seen as fitting.
 
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Information on how to live with a disability in general. The importance of acceptance, understanding the legal aspects, how to speak with others about the topic.

Information on how to live with the particular problems associated with the illness. Which is mainly pacing, learning to recognize common patterns and states (false energy, wired and tired, rolling PEM, delayed PEM, sensory sensitivity, reactions to foods/eating, shifting baseline, overestimating one's capacity during periods and moments of higher energy).

Recognition of the impairment, so that patients are allowed to pace without being punished by society for being lazy.

A warning about unevidenced therapies (there would be less risk if living with the illness was less difficult).

Advice to improve sleep, diet, rest, physical activity, and maintaining emotional health and social contact should be offered, but without promise of improvement or pressure on patients and in the understanding that these things are highly individual and not always easy to add to one's life.
 
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I don't think this will ever happen. In any country, ever. The sheer cost of that for the government would be unbearable so shifting that weight to relatives and quite unfortunately, letting people perish from the lack of care they need is what anyone in position of power will choose 100% of the time.

But it would be nice to imagine a sound-proofed, dark facility with 24/7 care tailored to everyone's needs. Last time I was in the hospital my carer had to bring a rice cooker, rice and quinoa and prepare me food in the room because the hospital literally doesn't expect people being only able to eat a limited diet.
It would be very difficult to make a legal or medical argument against specialised and adapted nursing/care home spots for the very severe once ME/CFS gets the proper recognition, at least if nursing/care homes are already government funded in your country.

The CRPD in EU might also have something to say about it.
 
I don’t think we will ever see an “ME sanatorium” type of ward.

I think at best it will be a special individual room a bit further from the noise, with blackout curtains and warning signs on the door, with tightly-regulated entry overseen by some sort of medic in charge/controller.

It will be set up/removed for ME if required, not designed and built to accommodate a swathe of S/VS patients
 
What I need: expert doctor to liase with GP surgery and specialists to explain I need home visits and accomodations if I need to have a scan or whatever done.

Doctor to reguarly check if new or existing symptoms are caused by something we might have missed.

Opportunity to take part in drug trials and basic research.

Knowing that I will not be treated like an insane hypochondriac if I need to be admitted to hospital.

Will post more if I think of it.
 
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