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I have to go see the doctor tomorrow because I have symptoms that could be something serious, but, of course, it could just be the ME. So everything is negative and that is a good thing but what about next time it happens? We already have all the symptoms public campaigns say should be checked...

The results can also indicate that in places where it is possible for black people to become doctors there are better health outcomes for all black people. Better quality education is a good place to start and then making it possible for poorer people to go on to higher education.

Strangely, it was my son. He was told that he was just a bit anaemic so it was nothing much, even though 22 year old men are not usually anaemic. Also told that exercise was shown to help fatigue so he should try that. As we have found neurologists are not good at asking patients first. He had...

Many, if not most, symptoms are nonspecific and shared by different pathologies. That is why there is a diagnostic tree to follow to find what the problem is in any particular patient. Think cough or headache for instance. My son and daughter had mild anaemia and a feeling of not being quite...

When Reeves was in charge of CFS studies at the CDC it was a low point for us. I remember someone looked at his patient cohort and showed how it was possible there was not a single person who had what we would now call ME/CFS. The research from that time does not contain any information that...

With a lifetime of being disabled especially when there was money for disabled support, I have talked about the response to exercise with people who had a lot of different diseases. None of them had anything like I get. In particular, the way it is possible to think you are doing fine then 3...

They talk about Chronic Fatigue Syndrome not ME/CFS so they are obviously using the term the way Sharpe and co did and ignoring every symptom except fatigue if they even know about them. That said, they find it easy to shoehorn every disease they come across into FND so I doubt if knowing the...

Since the start most FND papers have been more about marketing that there is a disease of FND than looking at causes and treatments often by using conflicting statements in the hope no one will notice. It has been very successful. Not only is it accepted as a genuine disease by medics but also...

Easy to do a large scale internet test. Even when I was much less severe I had the same problem which is easily measured. Things like memorising numbers or tracking things on the screen I manage well for the first few times then I get slower then I can't control my arms to hit the buttons...

The definition of CFS was very bad because it did not come from studying patient experience. Strauss said that all the patients had fatigue so that was put in the name though it is possible that he was influenced by all the doctors wanting to research fatigue. If you could find a drug to lift...

Reading the letter underneath the one from Robert. There is a vast difference between a reality based optimism and the false idea that keeping positive is a treatment with its underlying threat that giving into sadness or despair will kill you. Putting aside thoughts of what might happen and...

I have paroxysmal dyskinesia and over the years there have been a few other ME patients who have said it is part of their disease. Official descriptions say that some patients while identical in presentation have a psychologically induced version which is diagnosed by taking a holistic view of...

This is what Strauss did for ME when the CDC investigated the Lake Tahoe outbreak. When he discovered that it was not chronic EBV. He dropped the requirement for a positive EBV test and renamed his initial diagnosis of Chronic EBV Syndrome to Chronic Fatigue Syndrome. That is how an outbreak bad...

This is as accurate a description of my ME as I have ever seen. Stop completely, wait a couple of minutes then start again. It has been like that right from the start when I was still able to go to school and live a fairly normal life. It has never been a fluey feeling or general fatigue that...

Stone and Sharpe defined what they called FND in a paper in 2008. At that point they said that movement disorders had to be approached with caution. Now any movement disorder is probably FND. Just one example of a strange movement disorder is associated with a small cell lung cancer where the...

My kids have Raynaud's and it isn't like that though the diabetes nurse says I have it in my big toe! It is definitely secondary probably because I have nerve damage and little feeling in my feet (but not due to diabetes because I have a strong pulse!)

Australian researchers did a study of metabolites in the urine of people with ME many years ago. Over the years. researchers have kept starting things but there was never money to follow anything up.

I have damage to my finger nails that I believe is due to vasculitis. and the tips of my fingers become smooth and then blister. My nails are slightly spooned and a couple are blue at the bottom. One nail grows slowly in the middle so it is split and damaged. The bottom is always blue and if it...

Friends with MS were told they had depression and/or anxiety before they became sick enough to be tested and diagnosed. Women get told they have anxiety if they complain about period pains! There is no reason why someone with anxiety, depression, schizophrenia or psychosis can't get ME but...

I had to read it again to check but I think the main point is being hidden by initials NCP and PPS. So the translation is - some people with non cardiac chest pain have symptoms which are persistent, distressing and disabling. We found these people to be inactive or unable to work, reported...