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PACE was actually one of the few trials that looked for harms. Unfortunately all this did was allow then to claim their treatment was safe! Originally the protocol was to look for harms that lasted from one appointment to the next but as part of their revisions this was changed to two...

I think this is connected to ME. I get nerve pain down my face a lot though it is not often as terrible as trigeminal neuralgia. It goes to my teeth and I have had them x rayed an investigated but I now realise it is the nerve not the teeth that is the problem. It goes across my nose like...

Simon Wessley says that we are too aware of bodily symptoms like heart rate so we imagine that means we are sick. Well I think so he actually says we "interpret normal body sensations as abnormal" Improving how much we are aware of bodily sensations makes it more likely that we will be accused...

After all these years they still do not realise that our problem is we keep doing too much. A phone app to remind us to stop what we are doing and have a rest would be more appropriate.

I use a cherry stone bag heated in the microwave to very warm. It relaxes the muscles, increases blood flow which washes the cells and brings in oxygen and such and the nerve cells can only carry a heat signal or a pain signal. It does not last but it feels wonderful to be pain free for an...

There is a narrative that has been used against us since the biopsycho people have been involved. As with all these ideologies they took the advice to rest when you felt you had to, now called pacing, and distorted it to declare that people like the ME Association and the medical experts who...

I like basic biology and believe that it will help the way forward for ME understanding, but this is a bit different. Healthy people staying in bed is not a natural state of affairs. It is like looking at the biology of standing on one leg for hours, all it gives you is that one situation. It...

So they have a model. Completely meaningless until there is any proof.

The underlying problem is that these courses are designed to help healthy people who experience sleep problems. Sleep is vital for health and modern society is not good for it so they probably do help many people. We, though, have damaged bodies. Sleep hygiene is not the answer to narcolepsy...

Workwell has what you might call a pragmatic, baseline theory from what they have discovered in their experiments. They believe that people with ME are limited in what the can do because the aerobic system, which is the one the body uses as standard, does not work properly so we are forced to...

Tiredness, and exhaustion are just ways of people describing a lesser or worse feeling but neither are symptoms of disease. They are a normal state of the body that only becomes associated with disease when they happen in ways that are not those expected. Feeling dizzy when you get off a...

That is interesting. So it looks like the burning could be because we can't clear carbonic acid. That would make sense if we run our aerobic system until it can do no more so the acid builds up. It would explain why it is not always so bad, burning, yes but not agony.

Many years ago experts in AIDS dementia said that there was an ME dementia which was transient. Dementia is the only way to describe some of our experiences like not being able to think how to get home or what carrot is. It is a much better word for even if it is frightening. We have minimised...

I can't find anything about this that I can understand. When I overexert my muscles burn like acid runs through them. If this is now known not to be lactic acid are there any ideas what it is?

I just checked the paper and the et al includes Stephen Strauss, inventor of CFS, who despised the patients and went to great lengths to spread the word that there was no legitimate disease present. I seem to remember that Wessely did a cortisol study as well. At the time I felt they were...

Severity of cognitive dysfunction may well be mild in ME in a short lived task. I can manage most cognitive things quite well once or twice but then get worse until I am not only cognitively challenged but unable to stand, dizzy and with a racing heart. Tests on people with ME always need to be...

Freudian hysteria was described as a functional disease because it served a useful function in the patient's life. Functional disorders like FND use the word in this sense but gain respectability by implying that they mean the same as biological functional disorders which mean that something is...

I would strongly suspect that any trials for back pain from BPS would be just as bad as the trials they do on CFS. The stunning results for fatigue in the PACE trial are used to promote CBT and GET for MS, rheumatoid arthritis and others so building on a false foundation is common in mind/body...

The problem with this sort of study is apparent with only a few minutes thought. No one is saying that all enteroviral infections lead to fibromyalgia so counting infections is useless and concluding that they are not involved is even worse. Measles can cause measles encephalitis. Concluding...

This is upside down. It is good that the problems of life for children in bad health are being studied; they desperately need practical help to get as much normality as possible into their lives. But ... fatigue? What about loneliness, boredom, lack of stimulation, sadness? Looking at...