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I sometimes think we worry too much about deconditioning being the reason for abnormal results. I did not do much sports while I was still well enough to leave the house, but I was up and down stairs, shopping, cleaning, walking briskly for at least an hour a day. Didn't know about ME or PEM so...

I think it is a much more complicated issue than simply HR going up with PEM. There are different levels of organisation in the body - how biochemistry makes the cell function, how cells join together to make an organ function then how organs coordinate to make the body function. I have tried...

New patients may not realise that Lloyd (and partner in crime Hickie) were busy doing to Australia what Wessely was doing to UK patients. Their papers had me shaking with anger and dismay at the time. I have never trusted the Dubbo study.

OK. I have been trying to find a way to explain the research, reading and discussions over the years but it is too difficult for me just now. So here it is and I am willing to believe much more is known about the immune system than when I was well enough to be learning and discussing it. The...

There has never been a correlation between severe illness and getting ME. I was no sicker than a usual summer flu, laid up in bed for a few days. Not up to looking into it, but I felt no surprise that mild covid was more likely to lead to long covid, I just took it for granted that was the case...

Did Fink not do the original trial of internet based treatments that Crawley copied? It is only original for this new name for the disease!

Exactly, Sean. The resilience required to survive the isolation of the severely affected should be studied by NASA for Mars exploration! As a patient group we epitomise the human spirit to survive.

The myth that there is a lot of psychiatric comorbidity comes from Wessely's early belief that ME is a type of depression. He achieved this by using questionnaires that have fatigue and sleep issues among others as symptoms of depression. They were also very careful never to use chronically ill...

That sounds like a great idea. It would be a good way to pick up fatigue too.

I go to aromatherapy massage once a month. It is of great help to me because it relieves muscle aches consequent to my ME. I also suspect that being touched helps my nerves remember how to work but I say that quietly :). I would rather have a treatment for the disease than something that helps...

I believe Margaret Williams was bedridden so managing to do things online may have been possible but publishing was too difficult. Over all the years of fighting for the same rights as everyone else it has not been acknowledged enough how high the cost of advocacy has been to people with ME...

I think ME has been treated worse than other diseases is that their stated agenda was to make it disappear. CFS never included the ways in which my body didn't work so not only do doctors not have a treatment they refuse to believe the things that go wrong when I tell them. I have been sick...

I find this sort of discussion frustrating. Before the CDC invented CFS ME was a recognised entity where the main characteristic, by observation and self report, was an abnormal response to exercise. This varied in that not everyone got every symptoms but it involved swollen lymph glands, a...

Yes, I am sure they will attempt to reuse all the misinformation they used about ME as that was so successful for them. Stating quite confidently that ME was deconditioning without ever taking the chance of finding out it was not true. The difference now is that fit, healthy people are getting...

Sampling many times a day may be the best way of getting a handle on ME.

McEvedy and Beard had done work on mass hysteria among schoolchildren. They looked around for another research project and lit on the Royal Free where most of the patients were female. They homed in on ME to help themselves, no looking at patients and trying to help them. In 1984 The CDC got a...

So the use of subjective criteria is now the barrier to treating people with CBT and GET. He conveniently ignores that all the objective outcomes of his own trials gave negative results. This is called lying.

If the measure is to be used to check the outcome in a trial I think the questions are not sensitive enough to give a meaningful result. Limited a lot, limited a little, not limited at all are the only options. We need treatments that take us from completely unable to limited a lot which would...

ME is not a sop to patients. The disease was originally given the name because of widespread muscle pain and neurological signs in patients which, alongside the belief it was caused by enteroviral infection attacking the brain led to encephalomyelitis. Originally it was called benign ME because...

It really is ridiculous and typical of the assertions made about CFS and no one in authority ever queried the evidence for them. I was ill for 17 years before I was diagnosed and was not at all deconditioned when that became the theory. Just asking patients would have shown they were wrong 40...