Research like this leaves me not knowing whether to laugh or cry. There is so much still to learn about cellular function, how it works and what can go wrong with it, yet medicine screams about FND and MUS with their patronising dismissal of patients.
It seems that nowadays everything has to be said in a simple soundbite. "Make time for Joy", 4 words ideal, yet the practical concept is totally lost by the brevity and it ends up being useless except 4 words fits into a questionnaire.
Even after all these years I feel guilty using scarce...
I had summer flu which is enteroviral and tested positive for infection a few years later. A lot of viruses have characteristic properties.
Since basic research has stopped being a priority in medicine viruses have been neglected. Too many are classed as trivial so not worth bothering about...
EBV has too long an incubation to account for the spread in epidemics and many people are too young to have EBV when they get ill.
The herpes viruses have been studied in ME for over 30 years. There may be something to learn and they may be important for a lot of people which would be good, but...
Questionnaires should come after observation. Just thinking about it, ask test subjects to do something which raised their heart rate over the average they had over the past 5 days and note how long they had been ill and how they rate their severity.
Then, say, a phone app where you put in how...
While I do not think the name Chronic Fatigue Syndrome has done us any favours at least it is better than Exploding Head Syndrome which sounds like a Monty Python sketch or, even worse, Nutcracker Syndrome which is
Do doctors not consider how these names will affect patients? It makes you...
The first time I heard of sickness behaviour was many years ago in the context of why some animals isolate themselves and hide when they get ill. It is a valid area of study but over time it appears to have been hijacked by BPS ideas so rather than a set of instinctive evolutionary responses it...
Ramsay was one of the doctors during the Royal Free Epidemic. Myalgic Encephalomyelitis was based on the symptoms of people who took ill then and did not recover and from similar patients after other epidemics which were thought to be enteroviral.
If ME/CFS is a consequence of other viral...
Oh I did not mean the ones attached to diabetic clinics, I am sure they do a good job. I was specifically referring to the IAPT program which is expanding from MUS diagnoses to uncontested diseases and I should have made that clearer.
I have family members with mental health problems and I do...
My heart sinks every time I see a demand for more money for mental health patients as it seems to mean more going to treat imaginary mental health problems in people with diabetes and the like while th epoor people with true mental issues have less and less spent on them
Unfortunately, they are...
It was all a bit confusion at the time. There may be written records or other people know more than me but when I first joined the ME association in 1984 Dr Ramsay was the patron and he wrote articles, gave talks and still saw patients. We spoke about myalgia and deep burning pain in the legs...
I know a lot of people with MS and their experience is relevant. The consultant is interested in the big picture and things like major deterioration but mainly gives out drug treatments. The MS nurse helps with everyday life and lesser things. For instance there is a machine that helps empty the...
I am not fighting a battle over names. I am talking about where the name came from and the difference at the time was devastating to those of us who had a multisystem disease that suddenly had a new name and worse still different symptoms. It was like a military coup and was designed to destroy...
The CDC investigated an epidemic in Incline Village. Experts told them it was another ME epidemic but they ignored that and it was never mentioned in the discussions. They said it was a new disease that was defined as having 6 months of fatigue such that you could only do less than half of what...
Waiting list controls are a source of bias as not getting any treatment leads to resentment. A control for CBT could be a group with tea, cake and chat as often as the CBT sessions.
No one does it anymore, but there should also be a control group getting CBT who have not got ME either another...
ME should be on the list because many people are bedbound and rely on a series of careers coming in so are at high risk not just because of fatigue. They really don't equate with people with mild asthma. There is asthma in my family and I hope they get vaccinated soon but they have a choice and...
There is a flaw in their reasoning. Their premise is that psychological distress is expressed by the body as physical symptoms. Then they say that women are more likely to be anxious. But if all these women were expressing their anxiety as physical symptoms then they should not appear more...
Thanks Jem, I have edited my post and will now write "I must read what I have written before I post" a hundred times :)
Thinking about it, there were a few papers by ME researchers that have said people with ME have a prolonged recovery from exercise sometimes up to 24 hours with no mention of...
When I crash, my insides shut down but it is in the same way everything else slows down, my thinking included. It is no wonder that our systems are out of kilter when everything starts up again.
Maybe it causes gut dysbiosis but it seems back to front. The sickness behaviour if such a thing...
What I mean is that fatigue is a serious problem for people with many illnesses but it is not seen as the defining symptom or primary disability in them.
In day to day life, many people with MS find that fatigue is the single thing which most impacts them most. They can live with the dragging...
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