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These studies that suddenly appear after the Oxford definition, or even after the invention of CFS have to be taken in context. Before that there were people like the Behans who were interested in ME and set up studies to tease out what it was and what might help. Now the studies were not being...

Pacing never involved finding a baseline, that came from the clinics. It simply means doing what you feel you can do, listening to your body and stopping as soon as you feel you have too. An early piece of advice was to do on a good day 70% of what you can on a bad day and more recently...

Infections were downgraded in society for years to the point where people complained about it being someone's fault if a relative became seriously ill with an infection. This attitude also became prevalent in medicine with teaching about infections making up far less of the curriculum. Now it...

When I read the book I was surprised at how much some of it matched my symptoms. There was a Horizon programme that followed a woman who was sick after flu or a flu like illness. She was lucky enough to be sent to see a doctor who knew about encephalitis lethargic and he diagnosed it, she was...

The list of long covid symptoms some people are experiencing are closer to the symptoms I had when I became ill and closer to what was described in 1959 by Melvin Ramsay than the fukuda definition or the experiences of many people who have told me they have ME over the years. I am finding it...

This has dogged ME since the psyches became involved. With chronic fatigue it is worse as being fatigued is seen as being a symptom of depression. This circular argument is hidden because they just say that people with chronic fatigue are depressed using standard tests for depression. I seem to...

When they are talking about the long term consequences of covid-19 they are not being careful enough about preventing everything being lumped in together. I am suspicious about that with our experiences. I've read that being ventilated in a coma in ICU is known to cause post traumatic stress...

Light and sound sensitivities are prominent in autism though they probably don't come from the same damage. It's always difficult to talk about what symptoms you have with your ME because they change so much over the years. I've found that a problem with questionnaires. You are right about...

Most MS patients I have met feel that fatigue is a major part of their illness as do patients with rheumatoid arthritis, lyme disease and many others. It is a dreadful, disabling symptom that makes life very difficult. But it is a symptom that cannot distinguish a disease as it is so...

The IOM defined PEM as an exacerbation of some or all of an individual’s ME/CFS symptoms that occurs after physical or cognitive exertion and leads to a reduction in functional ability, that is why they called it systemic exertion intolerance disease.

People with ME get worse with exercise. There is a grey area at the margins where people who are pacing very well will not get it unless they decide to take up jogging and at the other extreme someone who is incapacitated by dysautonomia or something else may not be able to do enough exercise to...

ME as described from the epidemics had problems with energy as the cardinal symptom. That is why we knew we had ME. Then CFS was invented (it did not match the symptoms of the epidemic the CDC were there to investigate) The US then saw fatigue, which was a minor symptom of ME in the same way as...

ME as found in the epidemics was thought to be enteroviral which was a dangerous idea as polio was considered defeated when the vaccine was brought in. I have come to believe that this association is the reason everyone was so keen to believe it was mass hysteria at the Royal Free. All...

Good questions, but frustrating that the answers have been known for over 60 years. The risk of PEM is lessened if you follow what your body tells you. Stop when you have to. Not easy in real life but help for new patients sort out priorities, benefits so no one needs to struggle to work and...

In response to Wessley and friends, Ramsay said that exercise makes ME worse so if someone gets better with exercise they could not have had ME. It was taken for granted in the ME days that doing things beyond a variable point made you feel bad. The other thing that was seen as basic was a...

I take it this study is one looks at which genes are activated at any given time so you can work out where things aren't working properly.

Exactly. It is nothing like GET and is not a cure just a way of getting a little bit more out of life if it is possible. In the videos, they also talk about small changes you can make that can help like packing your shopping into bags in categories like freezer, fridge, cupboard then when you...

Investigating PEM is like trying to investigate insulin dependent diabetes by asking people about symptoms - do you get a headache after eating chocolate? Then you will get it confused with migraines. The individual symptoms and how it manifests is, in some ways, not as useful as the simple...

From the videos I have seen by Mark Van Ness I think he is talking about the way I improved what I can do. I lost all my carers so I ended up spending all day in a chair or bed with a plastic tub of sandwiches for my dinner and a water bottle because it took all I could to get to the toilet. I...

We have a major problem in that the BPSers can do large trials of GET, even in children, because they announce that the treatment does not cause any harm and carefully do the trials so that harms can't be reported (one women who became ill on the FINE trial said that when she told the nurse she...