UK thoughts please

[Molly98]

For example, I'd like to use a clinic that tests for POTS/orthostatic intolerance and gives good advice on treatment. I'd like a clinic which advises on pacing based on the use of heart rate monitors and actometers alongside symptom diaries for those who need this. Most of all I'd like a clinic that takes seriously and investigates physical symptoms properly, and is run by a doctor, not an OT, a nurse or a psychologist.

Me too @trishrhymes, this is exactly what would be helpful until research finds suitable medical treatments. Spot on.

 

[slysaint]

Unfortunately, many doctors still know little or almost nothing about how to diagnose PoTS and how to manage it. As a result, many people with PoTS are left undiagnosed, may even be misdiagnosed as having anxiety, panic attacks or hypochondriasis

exactly what I am 'afraid' of; ditto with OI.

the NASA test as Lucinda Bateman describes would probably not be popular with GPs over here as it would take over 10 minutes........but as she says it should be on the list of tests of anyone being diagnosed or already diagnosed with ME or CFS; so as Trish said it should be offered as a matter of course at any clinic.

But, as with most things to do with treatment or lack of in this country, we always come back to NICE/NHS guidelines.
Until these are scrapped/rewritten from scratch it is pot luck ('scuse the pun)

 

[charles shepherd]

exactly what I am 'afraid' of; ditto with OI.

the NASA test as Lucinda Bateman describes would probably not be popular with GPs over here as it would take over 10 minutes........but as she says it should be on the list of tests of anyone being diagnosed or already diagnosed with ME or CFS; so as Trish said it should be offered as a matter of course at any clinic.

But, as with most things to do with treatment or lack of in this country, we always come back to NICE/NHS guidelines.
Until these are scrapped/rewritten from scratch it is pot luck ('scuse the pun)

One of the many reasons why the MEA takes the position that the NICE guideline on ME/CFS is not fit for purpose is because it makes no reference to the role of autonomic nervous system dysfunction in ME/CFS and the various clinical problems this can cause. In particular:

Orthostatic intolerance
Postural hypotension
PoTS

The NICE quick reference guide for doctors refers to 'palpitations in the absence of identified cardiac pathology' on page 7 - and that's it in relation to ANS symptoms

And apart from advising health professionals to NOT do head up tilt tests routinely (page 8) there is no guidance whatsoever on the cinical assessment of ANS dysfunction in ME/CFS

I have also discussed the way in which the NICE guideline fails to deal with ANS dysfunction with Professor Peter Rowe. I know that Peter also shares these concerns and he has (I think) also tried to do something about it - without any success

Hopefully, this very serious omission will now be addressed during the NICE guideline review

 

[2kidswithME]

I too saw Bateman's talk about he NASA stand test, which seems to be easy to administer and doesn't require special equipment, only a longer appt time. Would make so much sense to test everyone suspected of ME/CFS as it would help identify POTS in an objective way -- and might help to persuade schools that our children aren't school phobic or have 'attendance issues'.

Oddly, our school was quite happy to set up any exam concessions needed, while at the same time contesting the diagnosis and wanting take over managing the illness, even raising the question of legal action In the case of one child. Fortunately we had good medical support, both gp and consultant wrote robust responses and the threat was dropped.

 

[ryan31337]

Just wanted to echo the good points made by others re POTS - there are good docs in the UK that understand it and will treat it (as well as anyone can at least...).

Its a real can of worms that, when considered properly by experts, may end up explaining many symptoms that before you considered were just 'part of ME/CFS'. Divide and conquer is about the best we can do for now.

 

[carer51]

@Braveheart I think you live near me.

The answer is simple: no.

The clinic local to you considers ME to be a 'mental health condition'. I was told this on the phone by them.
A patient with ME who is severe has been sectioned as severe illness is not recognised. I think one of the doctors (I have spoken to him about it) has a vague idea it may be a physical illness, but seems to know nothing about it.

The main hospital believes it is a 'mental health condition'. (Told me by a doctor when I was taken in by ambulance a few months ago.) The doctor told me I would be treated with 'unkindness' if the consultant discovered I had been diagnosed with ME.

A local GP who feared he had the illness himself told me that his colleagues regarded ME with even more contempt than they do people with depression. This is an exact quote.

If you find a doctor who believes otherwise (and there is one whose wife , I suspect, has it) please let me know.

Others have said they do know it is a serious physical illness, but they say that they dare not support people with ME as they fear that their colleagues will treat them as badly as they do their patients with ME.

Please PM me if you want to know more.

I think some are beginning to change their minds but they are afraid to speak up as yet.

That is horrifying.

 

[carer51]

I've just ordered an Epson pulsense 100 for James after reading this thread, he often feels distressed wondering why he feels so bad, wondering what he did earlier, yesterday, the day before...I think this might help him to know how much he is actually doing. He will try to do exercises like press-ups or help with housework and I don't think he realises (even after 15 years) how much that affects him later on. Maybe it will tell us something about any OI or potential for POTS or maybe even sleep issues too.