UK: Updates to NHS ME/CFS Information may help you get treatments for your PHYSICAL symptoms

[livinglighter]

ME and CFS is defined as a neurological disorder by WHO and the NHS have it classed as neurological too using SNOMED. The problem is the fatigue clinic uses Psychosomatic therapy since the PACE Trial as it was incorrectly evidenced to work at the time.

 

[livinglighter]

It’s messy as the UK diagnostic criteria allows for those with psychosomatic disorders and organic ones to be all diagnosed with ME.

I have a good source for psychosomatic disorders that you can read and try to distinguish for yourself if your issues are like it. There is a lot of cross over with many organic diseases such as ME/CFS. I’ll make a post soon with the info.

 

[Emmarose47]

Psychosomatic. Sufferers had the mistaken belief that they were unable to exercise leading to de-conditioning of the body leading to fatigue. They were thus treated with CBT to correct the mistaken thought process and graded exercise therapy to recondition the body.

Gee ! My goodness .....yes the service I am under still have elements of graded exercise in the mix

 

[chelsea49]

It's step in the right direction however trying to get any kind of help from the NHS for these kinds of conditions is still mostly a waste of time and a massive hassle. You're better off doing your own research on here and trialling treatments yourself through online pharmacies or using supplements.

 

[chelsea49]

I was referred by my GP to the specialist allergy dermatology clinic at guys for MCAS, they are supposed to be MCAS aware but this Dr Lawlor was probably the worst doctor I've seen in my entire life. I felt like I was speaking to a kid, I don't really care about what her voice is like but it was extremely strange and sounded like I was on a prank call at first. She was very eccentric/loopy, she didn't sound fit to be in a position as a specialist doctor. I also found out afterwards on the MCAS fb group that she had come out of retirement and many others had bad experiences with her (actually most a lot worse than mine).

She doesn't believe MCAS is real despite it already being proved and other docs in the clinic saying believing it's a real thing. I just got unlucky and saw the worst doctor they had there.

I also was concerned about my GPS referral to this clinic as it was a dermatology clinic and I knew they would only be able to looks at dermatological related things but my GP assured me that wouldn't be the case. Well turns out I was right and Dr lawlor was only interested in my dermatological symptoms. My GP also said they were the national referral centre for dysautonomia this was also untrue. This is not the first time my time has been wasted with a poor referral my GP also referred me to a neurologist for a second time who also wasn't able to help I told my GP standard neurologists wouldn't be helpful.

My follow up appointment for this clinic was supposed to be a month ago, well after months of waiting I get a call saying this appointment has be cancelled and rescheduled to august...

I also have issues with the Gastroenterology department in the NHS I had my appointment in late september, the specialist asked for basic blood tests and a small intestine permeability test for possible SIBO, well I never heard back from them as I guess tests were normal. So I email the specialist a few times and no reply. I call the hospital and somehow manage to get through to the specialist directly, he said his secretary will contact me for a follow up appointment. I never hear from his secretary and I follow up with emails and still nothing months later. What a joke and waste of time.... It's now May, all I wanted was to try an antibiotic like rifaximin but these fools make it such a headache to even get a simple thing like that. Precious time of my life wasted. For three years I've just wanted to try antibiotics to fix my gut issues and chronic infections but these people make it a nightmare.

Lesson learnt I won't bother with the NHS ever again...

 

[Reading_Steiner]

Wow that is great! What country?

UK ben. I have done the 2 blood tests, talked to the doctor about the first one but they never contacted me about the second one, which was meant to be more specialized in response to the results of the first one. They have given me a hospital appointment to get an ultrasound done, obviously they suspect structural / functional liver problems but I don't know if I will bother going after discovering JL's research. My cfs came on overnight and the liver function problem seems to date back to then, from what I could gather by asking them about past blood tests ( they don't seem to use their brain and instead just follow procedure ).

I would imagine that going to a hospital gives one the highest chance of catching the 'covid' that they say is going around. As far as I know I haven't caught it yet despite going out nearly every day, but that could be due to the antiviral state thought to be bestowed by me/cfs, i've heard on this site though that it is possible to catch 'it', or something that seems like 'it' at least even with me/cfs though ( PCR test seems like it can give false positives ). Also I would rather not catch MRSA, and I heard its very common in hospitals. I don't know if I am worrying unnecessarily and potentially putting my life at risk, been seeing people talk about vascular damage and stuff caused by CV-19 and it gave me a slight fear, although I haven't worried about it up until this point. I have a predisposition towards developing anxiety, OCD, paranoia etc.