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In Lily Chu's paper she found that inflammatory symptoms were common after exertion in people with ME but absent in healthy people. This covers chills as well as sore glands and throats. It is such a unique category of symptom type that it should be emphasised.

The other big issue with the LP for children may be outside the science but is surely relevant. Parents are desperate for a cure for their kids but they also have the additional psychological pressure of not doing something that could have cured their kids. Years ago a woman on an ME forum with...

Numbness of the lips and round the mouth is also seen to be a positive symptom of hysteria. We can't win.

Actually specifying "when you were last well" is a bit of an improvement, but most people have, say, more drowsiness at 65 than at 14 so it is still a useless scale for people like me. If they have to use a comparison rather than an absolute number scale, why not to how much you would like or...

ME was never considered idiopathic fatigue of unknown origin, neither was epidemic neuromyasthenia (the clue is in the name) The were considered as epidemic diseases which did not resolve in some people and ME was characterised by its variability. Nothing I read after I was diagnosed in 1984...

Aberrant movements are not a bodily emotional regulation process. There are many genetic movement disorders which are caused by ion channel dysfunction. There are also movement disorders caused by autoimmune problems due to certain cancers. :banghead::banghead::banghead:

That makes so much sense. Why do they not ask us to say how much fatigue we have? Of what relevance is how it compares with any particular point in the past?

The document says that symptoms must be "moderate to severe". Most of us have a distorted view of ME. Our mild ME has moderate to severe symptoms. It is just that severe is very severe for us.

Like you I have been ill so long I can't remember but they are not specifically asking you to compare with what you were like when you were well, we are just assuming that. They are asking as usual which means the way things usually are - I can't think of another way to say "usual" it means what...

It is impossible to fathom why they thought this was a good scale. Why is there not a section for mild fatigue or moderate fatigue? They seem to think it is a good thing that so many people cluster at the high end. How can a scale be good if everyone scores the maximum? Why not extend it...

When I was involved with abused children many years ago learned helplessness was used to describe the apathy you often found in them. It was described as sitting trying not to be noticed waiting for the next blow to fall. In adults it could maybe be seen as low esteem or pessimism I suppose but...

I was corrected when I posted recently as I had always read neuromyasthenia, the US name for ME, as neurasthenia. That could be the mistake made in uptodate.com. We have a history of unfortunate names.

Does anyone know if they have changed it from usual nowadays?

As is usual with these authors their language is so dense and convoluted that it needs parsing out to find what they mean. When I was starting out at university forty odd years ago there was a movement towards clear speech in scientific papers which has not reached them yet. Some papers are hard...

Not friends.

My husband took a thyroid storm, producing so much thyroxine it burnt up all muscle and his eyes turned yellow as his liver became damaged. He was treated with radioactive iodine to destroy his thyroid so became hypothyroid overnight. He is treated with thyroxine and the dose has been the same...

Historically doctors needed to make up a narrative to explain symptoms, but to attribute these to stress and overwork nowadays is unforgivable. Something goes wrong with the workings of the body and finding what it is and correcting it should be the goal of modern medicine.

SW said it was the new name for neurasthenia in his paper "New Wine in Old Bottles" Rationality and science had no part, just ideology.

I was originally diagnosed with a form of migraine, so because of my frequent bouts of ill health and because blood donation was seen as a great good in my family, I went regularly. Like you I worry that I passed it on. We will never know but our good intentions only went wrong because of...

I stopped carrying a donor card because of my ME. A friend who had a kidney transplant argued with me because he said organs were needed, yet despite his ongoing ill health he was able to work and go on holiday while I stayed at home lying down most of the time. I would not wish this disease on...