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I could understand, just, if the author had critiqued the Workwell findings of a damaged aerobic system leading to an overreliance on anaerobic respiration with all the problems that brings. Instead, all the scientific findings are ignored so she can say that there is no medical reason for our...

When we had our flu vaccinations this year it was very well planned to prevent infections. Medical personnel have been using anticovid measures for months now, it is their daily reality. Whether that will stand a mass rollout I don't know. Many people with ME get the flu jab and others with no...

I trust Chris Ponting, he seems to have our interests at heart but the move to the University of Edinburgh worries me as it was the home to Michael Sharpe and still harbours Jon Stone. Their views are very pervasive.

Despite how long I have been ill, I have a continuing battle to not do too much. On many occasions, I have wanted to do something so badly I have ignored my body and gone ahead. Which is common in ME. I presume it is because I am working on adrenalin that I usually manage but the damage goes on...

It highlights how unscientific it all is because they can fit everyone into it and nothing we say can disprove it. I was a marathon runner before I suddenly got ill - well you over trained. I loved my job and had just been promoted - you were subconsciously looking for a way out of your new...

When they talk about mood disorders in ME they bring in a lot of confusion as they always seem to do to make psychology more important than it actually is. They use terms such as dysthymia (persistent mild depression) and alexithymia (a broad term to describe problems with feeling emotions. In...

There are papers to support both views simply because of the questionnaires they use. If "feeling fatigue" is taken as a sign of depression then they can find 100% of CFS patients are depressed. In MS studies they have used modified scales so that the physical aspects of the disease are not...

We found nothing so further research is needed .... Also "A history of at least one FSS was reported by 20.4% of patients" How many patients said they had an FSS? The usual thing is for doctors to interpret patient symptoms as indicating an FSS. Just rubbish.

Then they say that the patients pain, fatigue movements, seizures, whatever have not changed but the patient says they feel less anxiety so it is all successful and confirms their theory. At least I assume so since I can't access the paper. :banghead::banghead::banghead:

:banghead::banghead::banghead: I just can't believe it, even after all the things I have come across "35 children with PNES, 31 children with other functional neurological symptoms (but no PNES), and 75 healthy controls." Where are the controls with epilepsy? They obviously could not take...

We are effectively denied psychological treatment for any psychological problems we have. I have friends with MS who feel such treatment has helped them with their problems but no on ever tried to cure their MS! It is always a risk for us to engage with psychologists.

If the different pills were taken at different times could the weather have had an effect? My muscles get very sore when it gets colder. That sort of effect is one of the reasons for having controls rather than self controls. I remember a letter in the New Scientist years ago by a man...

In the publicity for the Pace trial they were quite happy for the papers to use recovery as it is understood in everyday life - back to complete normality - even while they knew that their figures showed that everyone was still very sick by the definitions used in medicine for other diseases...

I've read that when a patient was brought into hospital with polio no one ever knew what the outcome would be. It could lead to paralysis of limbs or just weakness, loss of breathing muscles so an iron lung was needed or death. If the patient recovered without obvious disability it was called...

The brain is incredibly complex so you would expect the number of things that can go wrong to be that much more than anywhere else in the body yet these people believe that there are such a small number that most of them are just the one thing - FND. The other important thing is that evolution...

Yes, the way that people with longcovid describe feeling well and going back to work or exercising then collapsing again fits with my own experience and Ramsay's description. Many people with glandular fever feel exhausted for months then recover and do not go on to get ME. Similarly, it does...

You are right that proper management and explanations work well, after all, we have all learnt so much from sharing experiences on the likes of this forum. If the basic knowledge of ME was widely known so that family, friends and employers have a good understanding that would be enough and...

Actually CBT is very important, if not essential, to our well being especially in newly diagnosed patients. We need to change our thinking but unfortunately not the way it is being done now. We need to stop thinking exercise is always good and the way to deal with illness is to fight it. We...

"FND is a complex neuropsychiatric syndrome" Do you think this is made clear to all those poor people who are delighted with the diagnosis? "There are clear positive clinical, electrophysiological and rarely imaging criteria that can establish diagnosis in the clinical sense" This does not to...

I really hope this will be good for us but the usual suspects have always managed to destroy any official reports that would help us. Remember Peter White got the last set of guidelines changed from recommending wheelchairs to be used if needed because they would just make patients believe they...