Dealing with the NHS

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Hi all,

Anyone got any advice for dealing with the NHS?

I've been feeling off since 2007, though it didn't really take full cfs shape until 2010 and has since shifted to something slightly atypical. Err, words, awkward bloody things.

I didn't find out about cfs until 2013, after a locum mentioned it. None of my many, many doctors mentioned it and it turned out they didn't even know about it either. I left the surgery I'd been at since the start of my troubles in 2013...

Apologies, will finish another day. Can't write any more today. Is there a draft facility?
 

ryan31337

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My 20+ year long experience has been to not expect any real help under the CFS label. Advice would be to try and isolate one aspect of your symptoms and get another diagnosis, even if its just another syndrome, as there will likely be more treatment or comorbidities to consider. Divide and conquer.

In fairness to the CFS clinic I attended a few years ago, once I made enough fuss in the CBT/GET group sessions to get me actually seen by the doctor, they did recognise orthostatic symptoms and recommended I be worked up for POTS etc. The doc also recognised I was getting worse, despite having had pacing long since nailed down, so wouldn't benefit any further from their limited talking/exercise therapies.

The local consultants my GP referred me to after that were pretty unhelpful too. It was only after I personally sought out some specialists in the area of POTS and self-referred privately that I got seen by people with the right tools and mindset, and once I had a diagnosis they took me on as an NHS patient. They've all been in the London teaching hospitals, which seems to make all the difference.

I've been bouncing around these specialists in London for a few years now. My 20+ year old CFS diagnosis has now been clarified to POTS, HSD, small fibre neuropathy, SIBO and axial spondyloarthritis - obviously with a lot more treatment avenues available to help.
 
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Totally agree with you, @ryan31337. From my experience with my daughter, POTS and autonomic dysfunction are the route to go down in the UK. If you don't have POTS/OI, I feel like your options are very limited on the NHS. Visit the POTS UK website and you can basically get the info you need to self-diagnose. Then take your results to your GP and ask for a referral to one of the POTS doctors on POTS UK. The NHS webpage on POTS actually links to the POTS UK doctors list, so you can show that to GP if he/she balks.

The other thing we found useful in the UK, though not NHS, is finding a Perrin technique trained osteopath. You'll at least be talking to someone who understands that ME is physical and can assess you for any possible mechanical issues that might be causing your ME. Initial appointment is around £50, then subsequent ones are around £40.
 
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Hi.
I echo these sentiments.
Divide and conquer is good.
Focus on worst symptom at a time.
If you have a typical symptoms that helps, focus on the atypical bit which may give you a pointer.
I was belatedly diagnosed 2 years ago. The ME service in my area fortunately only does pacing now so I did not have to have the get/cbt argument, but unfortunately I had already "getted" myself into disease progression under the innocent assistence of a pain physio when we believed I was recovering from surgery and viral-meningitis.
It's only when I found a local support group and someone said my symptoms seemed "potsy" and I dragged myself to London to a private, well regarded cardio off the POTS website list and to a neuro-otologist that my symptoms made more sense. But not before I had to become a part time wheelchair user.
I did also find a nutritionist useful in getting GP to test for nutrient deficiencies. Vit D is a big one for me.
I also get some benefit from an experienced cranial osteopath (she is not remotely at all perrin trained, I don't think it's the technique that matters). Particularly early on with brain fog. I think vascular stimulation increases blood flow.
I'm currently considering a private fatigue specialist Endocrinologist who I have very mixed feelings about and contemplating private dna testing for genetic issues around glutathione and other metabolic pathways plus mood disorder.
I'd have liked viral testing given my onset and the opportunity to try anti viral but that seems wanting in the UK.
 

aquariusgirl

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Dr Weir is a retired NHS infectious disease doc, I want to say, who sees patients privately. Do a search on this board and s4me.info for more leads...