Why are places allowed to not follow the NICE guidelines?

They just don’t like these ones, not quite mean spirited enough towards people with ME/CFS, and no one can make them follow them so they don’t.

 

I'm less certain whether that is actually a problem with the "ME/CFS label" rather than a very general problem of a lack of follow ups and people just being discarded in the medical system once someone has dealt with them in some way that is deemed as appropriate by the system. There will certainly be additional problems faced by pwME that are very problematic but I think there'll be plenty of people with a well-respected diagnosis that are unable to get the attention they would deserve and are discarded in a similar fashion.

I'm have no idea how this can be solved in the case of ME/CFS but it seems rather necessary that every ME/CFS patient should have the option of yearly full-check up, when in reality most have been left unable to see a doctor for years. I doubt things will change until someone very commited steps up to get the ball rolling.

 

I think @Ash has a good point here - I am sure people with ME/CFS are seen regularly by GPs and deliberately not investigated for symptoms that might merit MRI scans because of the diagnosis on the notes. This sort of thing happens all the time and with other diseases too, but I suspect especially with ME/CFS.

The debate arose originally in relation to the NHS not being obliged to fund things outside Guidelines. But I don't think that applies here at all. Someone with ME/CFS should be treated according to guidelines for every possible other condition they might have all the time. That might mostly mean not 'suspecting' MS because the symptoms were not indicative but there would be no applicability of the rule 'not obliged to fund'.

It would be different if the ME/CFS guideline said do not do MRIs in people with diagnosed ME/CFS who have other symptoms but I don't think it says that. Nevertheless, the way these guidelines are written in terms of making diagnosis is often pretty poor in formal decision-making or algorithmic terms. Doctors are notoriously bad at describing how they make decisions. And so there is ample room for misinterpretation.