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The answer to all these questions is that despite decades of investigation nothing concrete in the way of pathology has been documented. It may be there is some cases but we need facts rather than vague analogies.

I personally do not think it is too much to expect people representing the ME/CFS community to come and post here to update people, since this the obvious place to come for information, open to all. Charles used to post here but doesn't any more. I would like to see a thread like this having...

Thanks, that is useful background.

The video from Binita Kane on the UK news thread is relevant. She is essentially following the suggested physician-led model but does make use of off label drugs and non-evidence based non-pharmacological approaches.

It is worth watching if you have 52 minutes available. Binita Kane is running a physician led service much as is being suggested on our recent thread, but in the private sector and with the difference that she recommends off label prescribing and makes use of concepts about disease mechanisms...

That seems a good summary, @Felis Catus. A wide range. of people accept the value of the 'holistic multidisciplinary team approach' without realising that these words are designed to manipulate perceptions and diffuse accountability.

Some nice suggestions today. I have tried to assimilate them on a new draft.

Perhaps 'build on the service model prior to 2003'.

I am thinking of adding in as an opening paragraph to the detailed text section: In broad terms, the suggestion is to return to the service model prior to 2003, often delivered by infection and immunity physicians, prior to the misguided introduction of a rehabilitation therapy model based on a...

Another point maybe is that the suggested format is just what the better served areas had before the 2003 directive to do rehab. It is simply asking to re-instate the previous standard.

It is almost certainly unrealistic, although even that i am not entirely sure of. Things may suddenly start changing. I am assuming that it is unrealistic to think that policy will shift directly to what is suggested but the current DHSC proposal is actually extremely vague - so vague that in...

To be fair, even if it risks 'breaching confidentiality' my impression is that the people who might well be MERC-PAG members on the ForardME working group are intelligent well-meaning patients and carers who openly acknowledge, and increasingly so, that they know rather little of the...

I am not sure how they define the subtypes as 'distinct'. There is variation, but we knew that. I doubt you can draw any conclusions from differences in other features of the subsets. They are very likely to reflect ascertainment variations as much as any real differences - if indeed 'real...

But that does not mean that all are. People with ME/CFS do not have generalised features of autonomic failure as seen in these other conditions. So it is better not to lump them all together.

I still wonder whether this has the implication it seems to have. It indicates what is allowed in professional terms but the caveats about 'eligible' and 'need' may mean that in practice an authorisation code is needed from a budget holder. In theory I could refer myself to lots of NHS units...

I think the bottom line may be that whatever route you go you need to have a referral from a budget holder with whom you are registered as GP (nominally NHS or private or both). If a GP is not inclined to refer for ME/CFS because they think it is a waste of their budget then they may refuse to...

Interesting that the cited headline says private providers. I wonder if some private GPs are in fact also NHS budget holders. If they are part of a large subcontracting provider they might well be. My GP will see me either as an NHS or a private patient. She has an NHS budget code for me, which...

That sets out what is allowed in professional medical terms but I wonder if it tells us anything about what is permitted in billing terms. I suspect it means that if the NHS budget holder (GP) is willing the referral can be processed as normal, but I think that is likely to be the sticking point.

This used to happen a lot but my guess is that these days an approval has to be got from the budget holder at some point. Otherwise who would pay the bill? Every patient is charged for. It may be that if the GP has referred to the private consultant the consultant just uses that as the...

They could refer to an NHS GP or to an emergency unit but I would be surprised if they could refer to a secondary elective service where you need a budget code. Can you tell us more?