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Coming late to this thread, I have found it interesting. I was referred to a pain clinic and found it a crushing disappointment, but reading this, I realise that some of the confusion was because she was trying to give me ways of coping to lessen my distress without ever asking me what I already...

May be off topic, but I have been thinking about all this (ME patients often have to lie there unable to do anything but think, one of our few advantages, really) Basically, we have the professional medical researchers with their published, peer reviewed studies who claim that CBT and GET do...

When heart issues were being looked at in ME, Paul Cheney examined all his patients and found that they all had diastolic heart failure, which makes sense as that is an active process and could well be involved with the problems found by Workwell. He was interested as he had systolic heart...

It is damaging the other way round too. Before I knew what I know now (young and naive!) my GP offered help with a very stressful situation by referring me to psychological services. They did not want to know or discuss the reason I was referred or what was causing me distress, it was all about...

There has been lots of interesting results over the years but they all fade away with no funding, like the cardiac problems found by the NIH but then .... nothing for 20 years. ME is so widespread that it must be caused by something going wrong with basic biology. The cells and systems work...

What gets me about all these papers is you have to search them to find the flaws. At first sight they sound so plausible and using 80,657 patients and 161, 314 controls are enough numbers to be conclusive, but when they get analysed you find the questionnaires are rubbish or the effects were...

One theory of ME is that the virus persists because tricks to avoid the immune system. Enteroviruses, which were implicated in the epidemics, use a variety of things to avoid triggering an immune response. They do not burst out of the cell but keep on replicating inside it as it is the death of...

I agree so much Trish. Clicking "like" for some of these posts does not give a proper sense of the gratitude I feel. For years, decades, no one outside our community seemed able to see the flaws in what was being said about us. It was surreal and I could not understand it. The fact that people...

Thank you for this. All we want is someone to look honestly, without prejudice, at the evidence because there is no way an honest person could look at all the evidence without seeing the flaws and upholding our case.

This, in a nutshell, is the problem for people with ME. When we try to get justice, we are scuppered right from the start because no one can believe how badly we have been served by certain sectors of medicine for decades. Trying to explain to medical researchers how bad the PACE trial was is...

There is never going to be a consensus because the patients KNOW that these treatments cause us harm because we are sitting in wheelchairs or lying in bed or taking flowers to the graves of those who could not endure the suffering of long weary, pain filled years. On the other side are those...

The research was done in Hawaii but I believe the main scientist retired or, possibly, died and the research joined all the rest of the promising ME work that just faded away. I seem to remember reading that one of the problems was that the Hawaii work tended to talk about ciguatoxin but the...

Dr Paul Cheney (one of the doctors from incline village who treated patients for years) said that stimulants use for ME simply revved up a broken system. It may help short term but will cause lots of damage underneath.

Neurasthenia was believed to be caused by the fast pace of modern life - in the 1800s! There was a paper recently that claimed that neurasthenia was still a good diagnosis for today. There was an article in the New Scientist that must be from this same research. It spoke about a large genetics...

They are doing what studies of FND have done. They assume that their theory is right when they misdiagnose people, then years later they make the same misdiagnosis. Somehow, they think that this proves they were right all along :banghead::banghead::banghead: If I decide epilepsy is caused by...

A lot of tesco own brand products are not available, though some are coming back. I think factories are not reloading their machines for different packaging. My husband (retired microbiologist) does the shopping. We have managed to get a hand sanitizer he uses when he gets in the car, but he...

Is it just me, or do people who experienced sexual abuse as children not have enough to cope with without being fobbed off with an FND diagnosis instead of having a proper suite of investigations when they get ill?

DS may have slipped from the mus category because it is a poster child for Functional Neurological Disorders. No longer medically unexplained because it is now explained as FND. They call it NES, non epileptic seizures and NEAD nonepileptic attack disorder and it is mixed in with things like...

are very likely to be percussive injuries. The wonder is that anyone survived the bombardments of the first world war without brain damage when their only protection was a tin helmet.

I am rubbish at sewing now because of the ME and arthritis (and no sewing machine) but I have made masks for my husband and grandson by making a two layer tube of t shirt material which wrap round the mouth and nose and gathered round the back with a hair tie. My awful tacking stitch is holding...