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The first thing that comes to my mind is that The US researchers of CFS ignored the years of expertise and research of the UK experts in ME. After about 20 years they rediscovered the fact that it is not fatigue it is about the abnormal response to exertion. Now they seem to finally be talking...

It is meant to be an organisation that checks out papers so scientists don't have to read them all, a bit like a version of "Which" for the research world. In this it fails spectacularly as far as ME is concerned. Like everything else with ME the rules and procedures are fine, just that they...

It is another step in destroying the NHS. They need people to start disliking the NHS as it is too well loved to get rid of just now. Once relatives start dying of skin cancer because they already have asthma, people will back insurance based medicine.

I think that is what cochrane is supposed to be.

I hope that is the way it is :)

FND is so diverse nowadays we would need to know if they have interstitial cystitis or irritable bowel syndrome, dystonia or pseudoepilepsy! The confusion caused by ME becoming CFS repeating itself. But assuming FND actually means some sort of neurological problem they have found it can resolve...

I am very paranoid about the BPSers. Could they have been waiting for the revised risk of bias rules to be published so they could put out the review and say that the problems of bias levels in the complaints has now been resolved as there is no longer any conflict with Cochrane's rules?

Yes, there are different things happening and if it was better understood it could give clues to where the dysfunction causing ME exists. There is a background lack of function which could be said to be where we are mild, moderate or severe. Then we try to do extra and get a flare of PEM which...

Exertional intolerance is not the same as PEM. It sounds like a symptom of PEM. I wonder how this fits in with all the other findings like deformed red blood cells and increased anaerobic respiration. I have a prejudice about talk of hyperventilation because it was used as a way of dismissing...

:banghead::banghead::banghead:

I don't think it will be possible to predict PEM, it is just too variable. I have type 2 diabetes which most people can control with diet or medication. However my blood sugars vary dramatically and unpredictably because of my ME. The liver releases sugar if someone feels ill and there is a lot...

It is important that the likes of her and our friend Michael are shown to be unwilling to educate themselves about the latest science of a disease they claim to have expert knowledge of. They can only state there is no physical effects because they ignore every opportunity to find out that there...

Wrong on all counts! Chronic sickness behaviour has been spoken about for at least 20 years. There is no evidence that malaise etc is maladaptive. Paul Cheney confirmed diastolic heart failure in his patients after it was discovered by the NIH(More research that was abandoned rather than...

If a large number of cases of ME are caused by viruses then CCI can't be a cause. It could well be a secondary disease having ME does not make you immune to anything. For intance, many of us have type 2 diabetes which I believe I was more vulnerable to because of the ME but it is not caused by...

Yes, it was probably cost effective for the trial but there is no suggestion it will be available on the NHS though maybe they were hoping it would be, give it time. I don't suppose the cost to parents who are influenced by reading a fake positive trial matters to them. They don't care if their...

I was in hospital for a fortnight being traumatised by neurologists but no one paid any attention to the fact I felt much better being fed 3 times a day without effort and spending the rest of the time lying in bed reading.

I hadn't thought about the cost effectiveness part of this study. Is that cost effectiveness to the NHS or does it take into account the large sums parents will have to pay considering that other treatments are available on the NHS for conditions taken more seriously?

This is a reasonable question, but what is often overlooked in the descriptions of ME is that there is a different way that overexertion becomes apparent. I have a typical 3 day delay after I do too much. That is when I begin to get sore throats, swollen glands and be unable to do very much...

Sudden onset is not really for the start of ME but for the infection which then becomes ME. Before CFS it was believed that you got a common infection, often enteroviral, but developed an abnormal consequence of that disease. That is the way polio works and other enteroviruses are very closely...

You are right.