Search results

That finding reflects a sane, rational response to the situation they experience. We have no treatments, a lifelong illness that can suddenly worsen to an extremely low level of functioning. In a similar way to other severe chronic illnesses our greatest hope is not to get worse. Similarly, we...

:banghead::banghead::banghead:

Actually it could just as easily read "Patients with cancer are prone to expensive and potentially harmful procedures." All patients start with an unexplained illness, what we need to know is how many get diagnosed as a result of each procedure. Without testing how is it possible to know if...

My head spins when I try to understand this sort of thing, but are they saying people with FND are not good at telling how fast their heart rate is?

I agree that everything we experience is because of the brain. It is a fascinating branch of science with the added awe of a physical organ being able to examine its own workings. My point is that that is not enough to be the base for a medical diagnosis. In, say, MS it is not enough to say the...

I was enjoying Sack's book until I read the section on migraine. He used the example of a woman who developed a migraine every night when her husband was due home but stopped having them when she was divorced (or something like that). He said the migraines were a way of avoiding him but they...

Where is the evidence that neurons are firing false fatigue alarms? What could cause them to do that? Has anyone shown that any fatigue is caused by neurons firing alarms? If it is true, why are the neurons sending false signals? Something must be wrong further down the chain of causation what...

They insist it is a single condition. Some studies have had a mix of people with seizures and IBS! The different expressions of FND is because the brain uses things it has had experience of before. It is hard to tell exactly what they mean beyond "FND is all one disease caused by psychological...

I have never seen any evidence that the mind can make you sick. There is no plausible explanation ever offered for how it could work at the cellular level. When you look at FND it is impossible to find that base. For CFS, they offer the explanation that you become deconditioned after an...

Can't remember the context, but research done looking at people including ones from the Lake Tahoe epidemic found that the immune system is overactive during the first few years then becomes underactive except in a significant minority where it remained overactive. These people sometimes...

The idea of a stressful time after 2000 is a bit of a stretch too. I remember in the 90s being shocked when I read an article he wrote which began "I go to dinner parties and people ask me what I do. When I say I research CFS they say "Poor you." " He was looking for pity right from the start...

I hate when they throw in opioid dependence. Finding that opioid painkillers help reduce pain levels is not dependence but they use the term to imply addiction and needing the drug for its own sake. Too many people with chronic pain are being classed as addicts with the answer to their problems...

Right from when I became ill at 14 one of my biggest obstacles to getting help has been the impossibility of explaining what is wrong with me. One aspect is the sheer complexity but that is partly answered by getting symptomatic help from painkillers of a wheelchair so I can go out though these...

Is he not the guy who shocked us by doing a dreadful study in Silicon Valley that concluded that covid was very widespread so the death rate was actually low so there should not be lockdowns? They did not take into account that they were giving free tests at a time when they were not easily...

ME was always considered to be a disease with a large pain component especially a deep burning in the muscles, pain in the joints, painful lymph nodes and so on. Most of the pain was a consequence of overdoing things so keeping ME under control can reduce it but not always probably because often...

We are strange animals in that we are only as fit as we have to be. If we do exercise beyond the amount we are used to so that we go into using anaerobic respiration as the primary energy source the byproducts of that make mitochondria die off which is a signal to the cell to make more. People...

All this can show is that some people with ME can have a different microbiome at any one point. With a disease that people have for years this sort of research can say nothing about conditions when things first went wrong. A better approach would be to look at what happens if the gut microbiota...

I am not sure that being diagnosed by a doctor means much for most of us with ME as very few doctors know enough about it and those who do are too ill to work!

It bothers me that the medical experts on "our side" don't understand so much about our illness. We will never get anywhere until that happens. PEM as a worsening of our symptoms is not conveying the true nature of our disease and has become an obstacle rather than a help to moving forward till...

It is always possible to have ME as well as another illness; sheer numbers mean that there is someone with almost every disease as well as ME. The problem is if another disease accounts for all the fatiguing symptoms there is no need to assume ME as well. There is a slight creep to saying that...