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I joined AFME when it started but Interaction had a different "cure" in every edition. When one said with confidence that the alignment of your bed was of paramount importance I left.

Years ago, my GP gave me a relaxation tape to listen to every afternoon. I tried this diligently in those innocent days but had to stop as it made me much worse. If I lay down and listened to it, I was unable to get out of bed for the rest of the day. She was completely bemused and took it as...

I read an article about fatigue in the MS society magazine which had been written about fatigue in rheumatoid arthritis for their magazine - if you follow me. It said that people with fatiguing illnesses lose the ability to recognise tiredness because they live with it all the time. They do not...

I don't think this is meant to be a competition over who is sickest, just that MS is considered a terrible disabling disease and ME a trivial complaint of whiners.

Dr Ian Richardson from Newcastle was one of the last polio experts. He believed polio affected one part of the brain and ME another. (I lost all my old documents changing computers so have nothing to refer to so relying on memory) The experts on enteroviruses have gone. The biopsies found...

The VP1 test which detects actual viral particles found evidence in the brain of enteroviruses. Patients were getting tested and being found positive. It was very exciting but unfortunately it was just at the time when ME suddenly became CFS when our favourite BPSers met together, with no input...

Thinking how to describe sensory overload. I experience actual pain and distress in the presence of loud noise. Bright lights make me disorientated and even milder noise and light wear me out. I think it might be that the brain can't filter out input. Reading the paper again, it seems like it...

Their results chimed very well with my experience and spelt out the differences between the reaction to exertion in ME and other illnesses. i have tried to explain this so many times over the years and now I have a good way of doing it. If I have really overdone things, I start by having a sore...

"But I view the us versus them mentality as inhumane. It's clear to me that there is a group bent on creating a second class of patients: making one group into the 'undeserving ill' so as to elevate ourselves. I'm not okay with the narrative that there are 'real' patients who have 'ME' and...

In the long distant past when I was doing microbiology at university it was taken for granted that infections often had a slow recovery. Later this was formalised as a post viral syndrome (for about 10 minutes until the BPSers interfered) After I had been ill for 7 years my husband took a very...

I have been plagued by this since I was a teenager with ME and it is definitely part of the sensory overload we experience. However my daughter was tested for hearing difficulties and was told this was a form of deafness where the auditory nerve works but the brain can't make sense of things...

At the time I assumed it was Malcolm Hooper's document he was referring to as a "diatribe". Prof. Hooper was invited to prepare a document to be published but after he had submitted it he heard no more and instead what was published (I think by the journalist who spoke to him) was the "breaking...

These are excellent points and very succinct. Fatigue should be relegated to a minor symptom in just the way that it is for MS. I think I just misunderstood about PEM or rather PENE in the very severely affected. Sorry about that.

I had always thought PEM was cardinal in all cases of ME but some very severely affected who had previously had PEM now felt they were just continually in the same bad place. I suppose if you can't bear light or sound at all it is difficult to see an increase. Needs research but how do you do it...

"Fatigue is an under recognised symptom of endometriosis which could help identify the condition and improve the quality of life for millions of women, a study has said." So the treatments that have been found to be so successful for ME/CFS (as still stated in so many places to do with the NHS)...

What I felt was important for us was the statement that if there was only a treatment with significant harms associated with it, it was better to do nothing. We are continually bombarded with CBT and GET having to be continued because otherwise there would be no treatments available.

Since PEM is the thing that distinguishes ME from other disease chronic fatigue without it is definitely a different thing. The only exception is in the severely affected where they are basically in PEM all the time so their symptoms can't get worse. I like the idea of loss of stamina instead...

I think it was tablets. If it had been soaking I might have tried it :) It was in the 80s or early 90s so a long time ago.

I have serious concerns about the ethics involved with LP that I haven't seen mentioned. Parents are desperate for their children to get better so it is not like making a decision about a new car, say. Someone saying "this will cure your child and give them their life back" - parents will go to...

Michael S said a few times that if they hadn't changed the recovery level (to 60) then lots of healthy people would have CFS (or something like that) all said in a way that mocked the patient complaints. Strangely, the statistician involved was Betty Dowsett's son in law. He disappeared from...