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

[rvallee]

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.

Which seems to be the main obstacle. Recognition means obligation means a temporary increase in direct expenses, mostly shifted from indirect losses, and would take years to pay off. It would mean billions in expenses for most countries, all for massive savings and benefits in the future, but in a context in which almost no one believes it will actually work anyway.

I don't think there's anything else here. It's seen as too big and expensive and, in a perverse way, this makes it easier to perpetuate, since most people can't believe governments and medical professionals would make such a, frankly sociopathic, calculation on such a large scale. And yet they always make that calculation the same way, because there are never any consequences anyway.

So in working out what competent clinical services would be like, such cost problems can be ignored since nothing will happen unless those problems are removed. This means there can't really be any transition between the current disaster and a competent, humane system. Because like every single thing we are blamed for, the entire approach here is all or nothing, with nothing in-between. It can only happen in a radical shift, decades of attempts at a gradual one and the ongoing disastrous mishandling of LC have made that perfectly clear.

 

[Jonathan Edwards]

It can only happen in a radical shift, decades of attempts at a gradual one and the ongoing disastrous mishandling of LC have made that perfectly clear.

I agree. I put it to the DHSC that a complete change of format was needed but there was no acknowledgement. The prosed model would probably cost no more. A large number of unnecessary salaries for useless sessions assesed by equally useless PROMS could be cut.

 

[Utsikt]

I don't think any place in current hospitals is good enough for the very severe. Building properly sound and light insulated rooms would be very expensive as major construction would be requested. But that is the bare minimum - place without stimulation so a person can properly rest.

There was a recent story about two low stimuli rooms being created in a hospital in Norway. The ME/CFS patients were never allowed to stay in them, but they were always in use because (to nobody’s surprise) some people need a quieter environment.

 

[V.R.T.]

this makes it easier to perpetuate, since most people can't believe governments and medical professionals would make such a, frankly sociopathic, calculation on such a large scale.

Yep, I literally can't talk to non disabled friends about how bad things are because I'll sound crazy.

It can only happen in a radical shift, decades of attempts at a gradual one and the ongoing disastrous mishandling of LC have made that perfectly clear.

Agreed - appeasing these people just means that they coopt our campaigns to increase their budget. We need a total change, a clean slate.

 

[Robert 1973]

It would be good if there were lists that actually covered specific care items like glasses and dental hygiene.

I think most opticians do home eye tests. I’ve had my eyes tests at home for free (because I’m on means-tested benefit I think) by an independent optician and by Specsavers. I also got vouchers which covered the cost of the cheaper glasses.

I believe some NHS dentists offer domiciliary services but it’s hard to find an NHS dentist providing any sort of services these days.

 

[Robert 1973]

No unevidenced therapies unless as part of well-designed controlled trials

I would like physicians to be able to prescribe drugs off-label as small scale open label studies in the first instance – as I think Fluge and Mella did with Rituximab in the first instance.

 

[Eleanor]

This seems a very useful idea, but

MS or Parkinson's might be better models/comparisons than MND.

 

[Amw66]

My NHS dentist does home visits , mainly for elderly patients.
My aunt resorted to private dentist for a home visit.