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No. Right from the start people pointed out that they had never shown that everyone with ME was deconditioned.

Derek Pheby was the guy who wanted a large study done to see exactly what people with ME felt their symptoms were, but they gave the money to the PACE trial instead. It was all part of the debacle after the CMOs report. A time that seemed hopeful but turned out not to be.

It takes years to validate a test and do all the tweaking necessary to make them consistent and even then individual batches can go wrong. You are dealing with biological systems which are different from the straightforward biochemical tests that are done in medicine.

Since I became ill in 1968 there has not been a single treatment from the medical profession that has helped me. Even worse, doctors do not understand the disease and have no insight into what I experience - no fatigue, but fatiguability!!! I cannot go for any other condition secure that they...

Thinking about this, I realised that what we have is this circular argument Someone gets an infection or whatever which limits what they can do. If they can only manage 50% or less of what they could before for six months they are diagnosed with CFS. Now six months of doing less than half what...

Lots of people in our local clubs enjoy what they do Saturday night but have payback Sunday morning :) It doesn't stop them doing it again the next week! And, of course, we all know that drinking a lot of alcohol is never dangerous in the long term....

I found the thought behind this sentence truly terrifying. Painful disorders can be treated with painkillers but if anyone uses those painkillers they are drug addicts not patients.

We have seen this over and over down the years. Everyone else is more important than us so the money to help us is used for someone more deserving - the exact explanation given when the CDC used the money they were given for ME for other projects. Grants have been used to look at liver disease...

So despite the continual emphasis that "the symptoms are real to the patient" we are back to 50% of MUS patients are lying. There goes the PIP :banghead:

I am diabetic now so I have a blood sugar machine. For years I have had attacks which I believed were caused by low blood sugar. It was very frustrating because it happened when I did more because I felt better. I was dismissed (and ridiculed on a couple of occasions) and told it was panic...

I agree. Having a very low number of antibodies in the blood doesn't mean much, it is how fast the body can make new ones when there is a new infection. Antibody tests are used successfully for things like hepatitis, but the kits are tested and quality controlled before they are licensed and...

I have managed to increase my fitness, and more importantly, do more so life is pleasanter. I started by walking to my kitchen once a day using a rollator and sitting down on the way to begin with (it is about 20 steps away). After a few weeks I could get there. It took months but I finally got...

I think it is because people keep touching their faces to make the mask comfortable and to talk to people but it can also give a false sense of security and stop them social distancing. Two people with masks on may feel they can stand closer. They know that as more safety measures have been...

I liked the "Brave maverick doctors are not all quacks, but all quacks are Brave Maverick Doctors." since it is a truer example of how numbers work than we get from the Brave Maverick Doctors treating ME.

This is Wessley's long standing idea thay ME is caused by a virus that people get over but being an invalid helps them emotionally or they mistake normal deconditioning so become afraid of exercise. That will be why they want to get people exercising as soon as possible so they won't give in to...

Part of the picture of ME is that there is a certain level of overall function which can give a number on something like the SF 36 but it is far too blunt a tool to pick up anything much about the processes going wrong. The original criteria included variability over minutes, hours, days and...

Even back when it was called pseudoepilepsy it was commonest among people with documented biological epilepsy. I looked into it at the time and the reason the distinction was made seemed to be that pseudoepileptic seizures did not cause physical harm. One description was that people did not get...

I started going to an MS therapy centre in 1994 just as MRIs were being used for diagnosis. They were not routine and very expensive, though a few people got one privately. Before that the diagnosis was clinical and "possible MS", "probable MS", and "definite MS" You were only told when it was...

My father was transferred to a convalescent home after a heart attack in 1970. They were given a glass of Guinness every day. Stout was seen as a way to build up patients and was given on the wards for years :) Now it would be CBT ...

It is all so back to front. Sensory processing difficulties in psychiatric disorders indicate that these disorders are rooted in the brain not working properly. They do not indicate that having sensory difficulties means that a disease is psychiatric. Finding sensory problems in FND is evidence...