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I remember all this stuff as I read avidly at the time because I had just been diagnosed after 17 years of not knowing why I could not do what everyone else could. Every suggestion of what could help went into a notebook as I worked out what I could do to finally work towards getting better...

Unless I have misunderstood, this was looking at patient results rather than doing new tests. If that is so, there could have been severe people tested because the low result on the second day is acceptable as physical proof of disease for disability benefits in some countries. I have read...

Workwell's studies used sedentary controls and other illness controls and did not find any group like the those with ME. It is a curious situation. CPET testing is done every day in hospitals round the world; they test patients with lung disease and heart disease in particular including the...

I felt this was my experience and I noted it in a lot of people I knew in the days before CFS. It makes me wonder if the mild symptoms are because the virus evades the immune system so it gets deep into the body. Then the disease can become long term for the same reason. Also, if you have...

I have been thinking about the PEM thing. A lot of the problem comes down to words and how we use them. When ME became CFS, many new patients spoke about the disease in a different way than I was used to. For one thing, they all spoke about fatigue which had not really been a big part of talking...

While we have made enormous strides in finding ways to convey what ME is, beyond chronic fatigue. we still have not got to the nub of it and may never do so until there is more research into the biology. PEM is fine as far as it goes but it is just a short hand for the way we do not handle...

ME was a disease of abnormal reaction to exertion and pain, often severe. When they reinvented it as a disease of fatigue the pain aspect was seriously downplayed. It was only after the invention of CFS that the association with fibromyalgia was mentioned usually in the US where they never...

They did a very large study looking at the lean offspring of type 2 diabetics and found that they processed sugars differently. this makes sense as it appears to be caused by genetic mutations which give people an advantage in marginal environments which may explain some of the increased risk in...

Well that has convinced me to wear a mask ...

My husband took a thyroid storm, his hormones levels were so high he had metabolised all his muscle and was turning yellow from liver breakdown. He was put on betablockers until he could get radioactive therapy. Now he takes thyroxine tablets and his levels are checked each year. His father, an...

Rvallee, I was being sarcastic about the horrible symptoms :). Not the symptoms themselves, but they way they are perceived by healthy people. A friend's husband was upset because a relative had been diagnosed MS which he thought was a death sentence. He was invited to go to an MS event and was...

When I read the descriptions of the Royal Free Epidemic it matches what I had better than many other things. There was an overlap between the survivors of the epidemic and new cases and there did not seem to be any differences. After CFS, the patient base became much bigger, especially in the US...

All the trolling and discrimination we get is down to the single fact that we are seen as just feeling tired. Everyone feels tired. People with other diseases, like MS, cancer and so on feel fatigue too as well as all the other HORRIBLE things yet they don't moan about it. People read about us...

This is typical of the confusion surrounding FNDs. If it is a genetic disorder which makes the stress system inefficient then it is not a case of emotions being "converted" into physical problems. It is perfectly acceptable to find that there is damage to the brain so that the stress pathways...

He talks about arms and legs "permanently fizzing as if injected with szechuan peppercorns" That deep burning fizzing feeling is what I get when I have done too much - cleaned teeth then tried to getting under covers instead of resting in a heap on the bed first, say. They seem to be describing...

Thank you.

I am sure I remember some research where they gave ME patients blood thinners. Though it might have been a theory or I could have dreamt it :)

Here in Scotland, my grandson was sick, not coronavirus. His mother spoke to the GP who then requested blood tests from the usual central computer system. She phoned the designated blood collection hub and we were given an appointment. My husband took him there and the nurse was in full...

Licorice raises blood pressure so it could be enough to reduce POTS

From my reading about the 2 day CPET test I got the impression that patients did not realise how much effort it was taking them to do what they did. Healthy people had a sense of when they were expending 10% of their energy when they actually were, but Me patients thought they were using less...