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The fact that someone with ME can do something and feel fine and think it has been within their tolerance then collapse three days later is so unusual that concentrating on why it happens is the most important aspect of PEM. The most clear cut, unique symptoms of a disease give the the greatest...

This discussion highlights the problem with the word "fatigue". One of the problems with CFS is that most healthy people feel they are fatigued too and people with MS and other diseases claim to be fatigued as well. They usually mean they do not have the energy they would like and things can...

There is absolutely no way that psychology could account for so much sleep. Just like narcolepsy and fatal insomnia something is going wrong in the incredibly complex brain functions that govern sleep.

So if they found anything worthwhile it was that cognitive function improves alongside physical function. ME makes both worse so a let up in ME will make both better.

It is possible that a lot of what we feel as the disease is actually the body protecting itself so anything which masks those symptoms could cause more damage. Dr Paul Cheney found diastolic heart failure in his ME patients. He himself needed a heart transplant because of systolic heart...

I see what you mean , but it isn't about fatigue but available power. The CPET testing results show that we have damage to our cellular respiration which makes the ATP that powers all the systems of the body. Batteries are a very good analogy for us. Not having enough energy available to...

Papers on FND state explicitly that FND is a new name for conversion disorder and hysteria. It is hard to pin down what FND people are saying I think they mean that modern scientific methods have explained much of the biology involved. the concept has revealed it. The last few months we have...

I could not answer questions about my diet as it varies too much. For much of my illness I have had hypoglycaemia (confirmed by blood test) if I had any exertion close to meal times. These come on suddenly and by the time I realise what is happening I can barely open a tin of coke or cram a bar...

You have laid it out very well, Trish. To have had this knowledge in the early days of my ME would have made a big difference. Nowadays I watch what I am doing with a heart monitor which helps me know when to rest and is a valuable tool. When I started in was in some groups about it with many...

If you went into the records office of the hospital you would get at least 60% saying they felt fatigue. It is a normal human feeling. It is a consequence of disease too, but it is made up of different components. The sheer effort of doing things when you are disabled, sleep problems, side...

They used to cherry pick patients to get the results they want but after the clinics began I think it might have been harder for them so nowadays they just get bad results and spin them in the bits people read.

I think that functional neurological problems are caused by a variety of brain dysfunctions as well as the ones that are just what they sound like, IBS, interstitial cystitis things like that. Seizures may well be linked to blood flow problems in the brain.

And if we were trying to claim benefits we weren't entitled to surely anything would be better than ME.

That is quite shocking to me. They talk about way of inducing psychogenic seizures but what is right there in front of there eyes is that seizures can happen because of lack of blood flow to the brain. It is only blinding ideology that makes the connection no electrical activity so it must be...

I am in a wheelchair because of severe ataxia and the consequences of having a positive Romberg sign which was once considered to be added to the diagnosis of ME. Many people with ME are in wheelchairs because of POTS. Until the experts on ME acknowledge these things we will get nowhere.

I was trying to see a bright side :) It is all dangerous rubbish. At best it is diverting funds from the search for treatments that might work for all these diseases they have hijacked.

She is ignoring the fact that many recent FND papers start by saying that it is a new, more precise name for conversion disorder and hysteria. I keep meaning to get a reference and keep it to hand it is so frank. The way Jon Stone lauds 19th century neuropsychiatrists and regrets that it has...

Well they complained that Keith Geraghty's paper was suspect because he had ME. Completely ignoring the fact that someone with the disease could be said to be less ideologically biased towards any particular approach because all they would want is a proper treatment that works.

They are worried about flu this winter as they know what to put in the vaccine each year because of what happens in the southern hemisphere but this year they did not get flu. It means the vaccine will be a guess. Surely carrying on with basic precautions like distancing and masks in crowded...

You only accept an FND diagnosis if you believe that the mind and the body contribute equally to disease, mainly because the doctor just told you so. I would never answer such a survey as I refuse to accept FND as legitimate disease.