UK people , your advice please. Is it worth pursuing help within NHS? After loads of research both on this site and locally, I see there are m.e. clinics where it seems they mostly offer the CBT, pacing and graded exercise programmes. I don't see any positive posts about this. Is there anything offered that helps? Does physiotherapy help the sore muscles? Thank you ..
My experience has been that the physiotherapy being offered is not well targeted to help people with ME. I am fortunate in being able to pay for massages or private physio, but NHS physio for ME is like all their other treatments based on the belief that our problems are caused by lack of activity rather than vice versa.
In my experience, at any rate, there is no massage for the sore muscles available on the NHS, and the exercises you are given are not targeted to the individual's needs. For instance, I enrolled on a core strengthening programme because of hypermobile joints, but found that all of us, no matter what our problems, were given the same exercises taught in a group, sitting in chairs (for the benefit of people who couldn't lie down, or because of lack of space in the little room, I don't know), and one exercise significantly twisted my hypermobile knees and ankles.
The physio was very nice and very interested to learn from us about mito dysfunction in ME but couldn't get over the BPS babble she had been taught, so we were told that chronic pain is simply the brain over-reacting to nothing, and is not caused by, or warning of, injury. This is fine until one of the patients who is in chronic pain gets a sudden pain on doing a particular exercise (the same exercise that caused me problems, as it happens) - she is told it can't be doing her any harm because it is chronic pain (the underlying assumption is that one cannot experience chronic and acute pain) and she must ignore it. The lady in question was using a leg that had been smashed in an accident and was held together with metal plates!
We also got lessons in mindfulness, which was not what I'd come all those miles for and was rather annoying as I have practised yoga since the age of 14 - which is a lot of years now. This seems to be disbelieved by the physio (evidently still full of the idea that we are in a hysterical state of mind), and I still had to pretend to be taught abdominal breathing. You could see how amazed she was when she put her hand on my tummy and found I was actually doing it right, just like I'd said I could. It wasn't what I'd come for - I wanted to learn how to help my joints stay in place, but that was just about the only thing not covered.
Some of the exercises you may be given could be of some help if your general activity levels leave you a little to spare and you haven't been doing any exercises at all - I know there were others on the course less badly affected than myself who had stopped all exercise on becoming ill and did find the course helpful. In my case, I had continued, as far as able, stretching exercises that I have been doing since I was about 20, and these have helped with the pain associated with tightened muscles and lactic acid build-up. I find these much more helpful than the exercises I was taught by the NHS, which I'm afraid I have ditched. The over-exertion caused by attending the course also caused me a minor relapse, and I found that at the end of it I had been enrolled, without my consent, on to a GET programme, which of course I cancelled.
I'm afraid there is no understanding of ME within the NHS, and all their treatments are based on a false model. I came away feeling the Core Stability title of the course had been a ruse by someone at the hospital to entice people with ME and fibro on to BPS-based treatment.
Sorry, this is a major rant, but really, what a colossal waste of public money.
My advice would be to do some gentle yoga at home and save your energy. Also, you might like to experiment for the sore muscles. I eventually discovered that the extreme tightness in mine was largely due to potassium problems. In ME it can have a problem getting taken up by the cells and a decent daily supplement can help. Other people find magnesium oil helps. You just have to see what works for you.