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Over the years, too many promising studies have never been replicated in large trials. For instance, the heart problems found in the NIH studies were just suddenly dropped but we could really do with knowing if they were accurate or not. All the recent studies being done in the US give us hope...

The recent studies on vision problems are the sort of things I have been wanting for years. They actually looked at something that is a big problem for many of us, identified where things were going wrong and, most importantly, gave us a vocabulary for describing our symptoms. When we know what...

In the days before CFS and the emphasis on fatigue, there were imaging brain studies which showed the parts of the brain which controlled homeostasis were damaged in ME. This was seen as congruent with an enteroviral infection. I think that POTS could be a primary disease but also a symptom of...

I do not experience pain and fatigue as dangerous. Telling me they are not dangerous is completely beside the point. The "fatigue" (I would challenge it is actually fatigue but that is by the by) I experience chains me to the bed unable to move a muscle and definitely no energy to be anxious...

Biopsychosocial approaches are very specific. They distinguish between disease, which is what goes wrong in the body and illness, which is the behaviour that comes from that. A behaviour can be changed by using psychological therapies. It has no place in medicine as it is a political tool rather...

There was a study done by the MEAssociation research fund (I think!) many years ago which had significant results for magnesium sulphate. It is probably still the only successful trial of a treatment in this coountry. Of course it lead to headlines in the papers of "Epsom salts cures ME" and a...

We know that ME happens in epidemics and clusters and organophosphate poisoning in rural areas gives a syndrome similar to ME. Glandular fever is ubiquitous though most people never get ME from it. I don't think a map would tell us anything more.

Thank you Sunshine. I don't mean to bring the personal into a discussion thread but sometimes it all seems just too much. I am so grateful to the people fighting this. Some days I just feel too old and ill. xx (need a chocolate and a strong cup of tea, luckily still an option for me :) )

I haven't read all of this thread, I am finding it too upsetting. The 27th July this year is a milestone in my life. It will be 50 years since I became ill. 50 years with not a SINGLE treatment thanks to the machinations of the BPS crowd who have built careers and fortunes on the back of my...

Going back to an earlier point, I have never minded being asked if I have mental health problems, I don't even mind them asking whether CFS has a mental health component. What is infuriating and totally useless is when no one accepts the answer NO. Even the PACE trial, bad as it was answered a...

I hope everything will become clearer and we will have a better vocabulary to talk about this sort of thing with more and better research into exactly what ME is. Actual Myalgic encephalomyelitis came in epidemics, including the one at Tahoe, so an acute viral onset has to be a major cause. My...

It's not as if the brain is a complicated organ :banghead: If you have a shared set of symptoms in a group of people it suggests a possible pathology in the brain. Now, psychological treatments may help people cope and retraining and rehabilitation may be useful in the same way it is for...

It isn't just women. In 1972 my uncle was not doing well, I can't remember exactly what happened but other people kept telling the family how bad he was but he never seemed that bad when he was around us. His doctor said it was depression and finally told my Dad to have a word with him "or it...

There is one point that is important about GET that I don't see mentioned. In 1990 I was advised to do more exercise, but I had a three year old so wasn't able to do more (already fit to drop!) When he started nursery, the bus didn't go right to it so I had a hill to climb. At first I was...

In the days before CFS the general feeling seemed to be that ME was more common in people who were not able to rest enough when they became ill. This included medical professionals, teachers, mothers of young children and students, who were also people who were exposed to lots of bugs. The...

I am very wary of anyone who worked in King's college, Wessley's home and any trial that think's CFS is extreme tiredness is not one where anyone has done their homework.

Just for information Ramsay and the others examined patients just after they became ill. By the time you wait 6 months the symptoms will not be the same. Their description of ME was that many patients experienced good (ish) health between relapses and that symptoms varied by the hour the day the...

I get exactly the symptoms you describe, Inara. They are a central part of my experience of ME and have happened regularly since the beginning when I was 14. I never missed any schooling or experienced fatigue but these episodes would come. I do not think they are TIAs because I have had so many...

I had a terrible reaction to metaclopramide too. To myself, I called it a pathological restlessness. If I was sitting I felt I would explode if I did not stand, then standing had to sit. Difficult to convey how awful it was.

So young, so naive it brings a tear to the eye :hug: or was that sarcasm?