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With the knowledge we have now, I think it is fair to say that post infectious syndromes have ME-like symptoms without the broken aerobic system and the PEM. Far too often we hear that things are like ME from professionals who think ME is chronic fatigue. ME may present as a PVS in the early...

The definition for CFS is so loose that many people with Lyme (and lots of other things) fit within it, but that is just more confusion, not an answer. If someone gets swollen glands, sore throats and feels as if they have flu consistently after a delay up to days after exertion they have PEM...

This is all so back to front. From experience with family members I accept that some people have bowel problems when under stress. The "fight or flight" mechanism is obviously involved but what are the implications? The functional view is that a healthy system (no genuine bodily system...

That variation was what Dr Ramsay felt to be the cardinal symptom of ME along with an abnormal response to exercise. We have corrected the misconceptions of CFS to rediscover PEM but this variation as he said "by the hour, the day, the week, the month and year" has not been given the same modern...

I was describing the problems with EC's work to a friend when I realised something. Bristol is behind training social workers and the police that children with ME are suffering emotional abuse so that child protection orders should be given - that it is the parents causing the illness. Yet the...

No matter what our criticisms are or how valid they may be the BPSers will call it harassment. The scientists who back us are the ones we do not want to alienate and I do not see how calling out the sloppy use of terminology would do that.

So significant differences between subjective and objective observations are related to underlying psychological factors. What does that say about PACE and the other studies.

I am not sure but I think they must mean physical disease when they talk about somatoform disorders if they are distinguishing them from functional somatic disorders. Which means they found that "imaginary" diseases have the same problems as physical ones. Then again who knows what these people...

A very important point. Until we know more about the mechanism and can measure what is going on underneath, there is no way that pushing exercise beyond what feels comfortable should be a treatment. There is historical precedent. Radiation was a miracle treatment for everything until they...

The evidence is clear now, that people with ME have a defect in their aerobic respiration system which means that their anaerobic threshold is much lower than normal and which drops even lower after exercise. The onus is on the people who believe exercise is the treatment for ME to explain why...

For a long while after CFS, ME was taken being depression. There was the odd bit about deconditioning and other things but it never formed a coherent narrative Going back over old texts things are mentioned that seem now to be part of the infection - deconditioned - frightened to move - more...

A recent article in the New Scientist said that all the evidence for food was just rubbish. Common sense says moderation is probably a good thing but there is no genuine scientific reason to change. Looking at food labels and choosing the thing with the least additives is as good a reason to...

It was designed by a guy who "overcame" his MS and is now passing his knowledge onto everyone else. I think there is a charity set up, but of course he sells cook books and things. It isn't quite LP but the same sort of "treatment" course His advice is to eat vegan with no meat or dairy - so...

JES, this is a genetic problem which affects some people. I always thought it was due to my ME but my healthy daughter and son both have the same. My son was given a hearing test and told everything was normal and left to get on with it but my daughter was tested at a different hospital where...

Like all these trials they have found that people who were able to finish the course were not so ill as people who were not. The more of the sessions you could do the less sick you were at the end, though as usual the set up is so ill defined that in reality it is difficult to say if they fond...

I can't stand this "positive outlook" push for the chronically ill. I go to an MS therapy centre and about a month ago they got in lots of stuff about a (commercial) programme called "Overcoming MS". The title alone makes me want tp scream. You can't overcome MS!!! It is just a short step from...

Initial post and some subsequent posts copied or moved from this thread. I can't stand this "positive outlook" push for the chronically ill. I go to an MS therapy centre and about a month ago they got in lots of stuff about a (commercial) programme called "Overcoming MS". The title alone makes...

I do know that neurologists are looked on as doctors who couldn't quite cut it as neurosurgeons. Years ago I read about an activist who was sitting next to SW at a conference. He asked her "Why do they hate me?" and she answered "Simon, do you ever listen to yourself?"

Thank you for your kind words. I wasn't really ill just not right with strange neurological symptoms like not being able to talk sometimes that I hid because I could not explain them. Lots of bits I recognize as ME now, PEM and fatiguability. They wanted to think I was well because they worried...