I never had PVF. I had an enteroviral illness then began to experience neurological symptoms including visual problems, speech problems and transient paralysis. Also what I would now call dysautonomia including loss of temperature control, disturbed sleep and neurological bladder problems.
When...
For anyone who is interested, libraries have a free service where you can access magazines (and books) including New Scientist, using an app called libby. You just need your library card number, though contacting your local library and asking about it might be best.
I get books through my local...
One of the reasons it is so hard for us to get our case heard is because ordinary people can't believe professionals could think like that. Literally, it has to be seen to be believed.
I used to think that all we needed was convincing science to change the minds of people in authority but...
This appears to be based on Garner's claim that he worried about every symptom when he tried to do pacing and got better when he stopped. The implication being that he would have been sick forever if he had not been saved from this perfidious pacing nonsense.
His lived experience is now worth...
This is a description of post exertional fatigue which is common to many illnesses. It annoys me because it makes it sound as if we are whiny by claiming to be unique when we are not.
The uniqueness of ME is that activity (only stressors in a very particular meaning of the word) causes...
I just want to say that microbiologists wanted the contamination with HIV and Hep C stopped but were overruled.
Lab precautions are a lot better now than they were, the days of mouth pipetting are long gone! My husband was in microbiology for over thirty five years without ever getting any...
There was a study done looking at pollution as a cause of childhood asthma. In another stunning divergence from good research methodology they looked at children from urban environments and from rural areas and found no difference. They assumed that rural children were faced with less pollution...
I am not sure what you mean. The psychological research that is being done needs controls with accepted physical diseases. Take the PACE trial. They found that there was a large number of drop outs in the GET arm but assumed this was related to social things (moving home and so on) not the...
The diagnosis of movement disorders is very complex. When Sharpe and Stone wrote about FND in 2008 they indicated that it should be used carefully for movement disorders. Now they say that movement disorders are the commonest presentation of FND.
The most pervasive problem in psychology trials of ME is not having a control group with chronic illness. Any effect they find could be because of the effect of being constantly unwell. Using just sedentary controls only looks at one aspect of life so is seriously inadequate.
edited to add...
People with longcovid are looking for advice now and do not have time to wait for the science to be worked out.
Paul Garner's take on pushing yourself, ignoring being ill and exercising your way to health fits neatly with society's vision of good health so someone who says that resting and...
I think this paper is very important because it shows that using dirty tactics to talk down criticism exists and is used in research that is not ME related to shore up professional careers.
We are mocked for seeing conspiracies and not being willing to accept any research that does not support...
Over the years, it has become clear that they know exactly what they are doing because they dismiss biomedical research for reasons that are more apparent in their own work.
Both White and Wessely have done what looks like biomedical research into ME but it was apparent at the time it was...
I might have misunderstood, but are they saying that groups which could be already be sorted by patient interview could be sorted by herpes serology?
Surely you need to take a large group of patients and then show you can sort them by a blood test.
That is probably true, though some doctors can be a bit terse.
A friend had a sudden sharp pain which sent him to A&E. He was told "It's your age" and sent on his way upset and fuming (and in pain!). Later he spoke with an orthopaedic nurse who explained that the problem was caused by tissues...
In orthopaedic trauma wards they use physiotherapy and movement to help bones and muscles heal. So that the patient can move the are given opioid painkillers. If they do not have adequate pain relief they cannot do the movement that will help them heal, have less infections and be out of...
I see what you mean, but I think it misses the point that this is only possible to say because of the distortions and manipulations of the BPS. They have made it a competition instead of an investigation.
The biomedical research is looking at hypotheses but nothing gets anywhere because the BPS...
That would be typical psychological thinking. An experience is horrible so that causes psychological problems, but then other people haven't experienced it and they have similar symptoms. Yes but that is because they are worried they will share the experience. :)
Having covid doesn't cause...
There are young people in ICU with this variant. If only 1% need hospitalization but there are thousands of people infected that is a dangerous situation.
My local hospital is opening up covid wards and asking for volunteers to work in them again.
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