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I wish I was exaggerating but I am not. An "Overcoming MS" leaflet said that evidenced based medicine means using all kinds of evidence including observations, anecdotes and experience as well as clinical research. Though patient experience not so much!

Evidence based medicine people who feel anecdotal evidence is just as good as a proper trial or that you don't need to do a trial of a parachute makes me want to sit them in front of a TV and watch Mythbusters for a week. A TV show which looked at popular sayings to see if they were correct...

yes, I think PEM is being used to mean exhausted after exercise which is not the way it is used in ME. The tide is against us so maybe it is time to try to establish a term for what happens to us. PENE may not be a good description but at least everyone would not read it as something it is not...

It is vital to make the distinction between immediate onset consequences after doing something and ones which are delayed. It is also important to ask if consequences appear a dew days after doing something you did not feel was to much for you at the time. These two issues are important in...

Remember, Jon Stone's paper on FND in 2008 was written in collaboration with Michael Sharpe when they were both at Edinburgh University.

Years ago now, I watched a TV program fronted by Dr Miriam Stoppard because I knew she would be talking about ME. It was horrendous, completely BPS in orientation. There was an invited audience as well as "experts" saying that ME was purely psychological. She also had people with asthma there...

Many people with MS are on antidepressants, or at least they were before MS drugs became available. I think they were handed out the way they are to women with ME. There is not so much reactive depression as with ME because it is acknowledged as bad and there is not the same struggle to get...

I was at the dentist today, finally after losing a filling the first week of lockdown last year. We were talking about the vaccines and they had both had the second dose of the pfizer a couple of weeks ago. They found they had less problems with this although they were worried as they had heard...

If you have neurological symptoms you should have an MRI. It has revolutionised the early diagnosis of MS and is vitally important because there are treatments which reduce the number or attacks and the risk of permanent disability. In the days before routine MRI patients with MS were not...

Diabetics monitor their blood glucose a lot so the normal levels in blood are well worked out. Healthy people may have surges after meals but it soon drops. Blood pressure and heart rates are well categorised as well. Using this device would give a lot of information about normal physiology but...

A while ago now, there was a case in the US with involving a boy in his early teens who was given to foster parents. The ME community collected money for an electric wheelchair but they refused to give it to him. I think he eventually became old enough to be allowed to make his own decisions and...

If some of the patients were not told the drug could cause problems yet experienced them it means that the drug is causing them not the suggestion, so to see that 12 years later there is a paper about "Post-Finasteride Syndrome: An Induced Delusional Disorder with the Potential of a Mass...

I know who is delusional.

They claim that PACE looked for harms but found none so GET is safe so they do not deny that one of the aims was to see if the treatments were safe yet the patients were told AT THE BEGINNING that the treatment was safe and could not cause them any harm or worsening of the disease so they should...

The findings from the Workwell experiments strongly suggest that the aerobic energy system does not work as well as it should in people they have tested. The important thing is that they make predictions from this and they work. If you act as if you have a damaged aerobic system so you slip...

Ron Davis described ME as the last, great, medical mystery of the 20th century. Instead of being treated as a mystery disease that should be researched and treated it was ignored and trivialised. If it had been treated like HIV or polio or almost any other disease there would be more answers...

That ME has many neurological symptoms is too often forgotten these days. Except by those determined to rediagnose all of us as having FND.

This sort of collapse after exertion is very distressing and disabling and seems to be what people with longcovid and a lot of other illnesses take to mean PEM and that may be a good name for it but it is not what I experience after exertion. Or, at least I get that now, though not so much in...

After 20 years of invisible illness I developed neurological symptoms that were embarrassingly obvious. At last, I thought I would be taken seriously. Sadly it was a devastating experience where all my realities were denied.

The doctor discussing sexual function problems gives the patient permission to talk about such private things, also being told it is a result of the drug can make it feel less shameful so there may be just as much problems in each group but only one feels free to say it.