Search results

I had neck pain which got so bad I was having to spend much of my time lying in bed with blinding headaches. I got the chance to go to a session of aromatherapy massage. She said that the muscles in my neck were solid and she could not get my neck to move from side to side. For myself...

A doctor giving a talk for millions missing spoke about herpes viruses (EBV is one). He expresses amazement that doctors quite willingly accept that chicken pox can live on in the body to emerge as shingles 60 or more years later but are dismissive over claims any of the others can.

I think we are finally getting the vocabulary to describe what happens in people with ME after exercise. With many diseases people experience post exertional fatigue but ME is the only one where you get post exertional malaise which involves a reaction from the immune system. (It is not common...

The point about exclusionary illnesses is that the illness would be expected to cover everything. It does not mean that if you have one you can't get the other. For instance if you have MS then feeling very fatigued is covered by the MS diagnosis you do not need to have CFS as well. However if...

:banghead::banghead::banghead:

Byron Hyde discovered a lot of his patients had thyroid cancer but it was dismissed as important because a lot of people have thyroid cancer without knowing it as it is very slowly progressive. What worries me about this sort of remission of symptoms is that the ME is still there in the...

As time has passed previously secret projects have seen the light of day. The Church committee investigation into the CIA brought all sorts of weird things to the surface. The MKultra project was only discovered because papers marked "destroy after read" were found in a CIA office. It was not...

Just a couple of points. There are people who manage to continue working or studying full time as long as they rest adequately in the evenings and weekends. Maybe not many but a friend who went to a local support group in the 90s managed to work till retirement with a lot of family support...

Before the trial started the ME community tried to get it stopped. There were petitions and contact made with the likes of Barnardos and the NSPCC, and the ethics committee. The only result was that they decided to use children over 12 instead of 8 (8 years old and told you are ill because it is...

If a higher percentage of patients than in the general population attended a fee paying school it follows that this would change the percentages to make the group as a whole less deprived, one fact not two. They are probably less bullied because you have to go to school or out into the world...

It is intrinsic to PEM - and distinguishes it from post exertional fatigue in other illnesses - that physical exertion can cause cognitive decline and vice versa. This has been known since long before CFS was invented. Speech difficulties were a major difficulty for me as a teenager. My voice...

I have exactly the problems you describe. One early name for ME was epidemic vertigo so it was always a symptom in many people. I have damaged proprioception found by a positive Romberg's test where you lose your balance or fall completely if you close your eyes. This was once suggested as part...

I like the description by Lily Chu "I wish to re-emphasize that post-exertional fatigue is not equivalent to post-exertional malaise. As described in the NAM report, PEM is not only increased fatigue following activity but also involves exacerbation of other symptoms, like muscle/joint pain...

I can't remember who it was, but in relation to the 2 day CPET testing they said that the healthy controls complained but the patients would have crawled over tacks to prove that they had a physical illness.

Having a family member involved in this it is a worry. His support has been passed onto a community group which is very good but it is reliant on grants. Too many community groups have had their grants removed and closed. So the NHS justifies moving patients on because community support is...

When I was less ill, I was seconded to a committee on child and domestic abuse issues. It was not as rare as you would think for a psychologist or others to persuade vulnerable adult women that what was really sexual abuse would help them. We also know that far too many adults finagle...

They used Oxford which needs 6 months of fatigue such that you can only do 50% of normal. How that level of fatigue is measured is another mystery of course. If it was by some preordained level on the SF36 then it probably meant that you were recovered by the new 60 points. I suspect it is a...

"As the number of patients who completely recover over time was low, recovery was redefined as patients who were ‘recovering with occasional relapses’ and those who had ‘almost completely recovered’." Why did they need to redefine recovery? Recovery was low so they could have looked at...

When I could still do chores I mentally divided them. Things like ironing and cleaning the top of the kitchen cupboards, not needed. Hoovering could be done very occasionally as it was the same effort no matter how long it had been left. Doing the washing and other things which were harder if...

I think fatigue in ME is like other diseases it can be there or not the problem was when they made it the cardinal symptom. Before that fatigue was just something that some people had like gut symptoms, say. I have fatiguability, I go on then suddenly stop, wait a few minutes then start, also...