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MS and diabetes both show differences because doctors follow a lot of different patients over the years and see how the disease progresses. They can pick out groups easily. ME patients are hidden from medicine.

I keep choking over neurological problems, problems with exercise and widespread pain, the very symptoms dropped from ME when it morphed into CFS

Behan did studies on muscle biopsies and found problems with mitochondrial function. At the time, Wessely had published a paper which found something like 90% of people with ME had depression so he said that the percentage Behan had found was not as high so the paper did not prove anything and...

It must be remembered that there is a continuity from the RFH outbreak to today. When I joined the ME Association in 1985 Dr Ramsay was still looking at patients and answering questions in the magazine. There were members who had become ill then and people who had become ill in the years since...

I think it could work as there is often not any sensation in the ears. I went to HBOT for 25 years and it was not a cure by any means but it helped with pain and sleep. I would describe it as feeling an uplift like a day at the seaside. HBOT works by saturating the plasma so that oxygen can...

Yes, I feel that about pain studies too. There is a general assumption that the way students react to having their hands in ice cold water is the same as someone on their third year of devastating back pain.

It would be more useful to look at how the GP reacts to the first patient consultation to see if there is a pattern. Which blood tests are done? What advice is given? What referrals are made?

Not everyone will be able to take the vaccine. Some ME patients may be in this group. Their best chance with this virus is if as many people as possible who can get vaccinated do so. Basically, if you are not in contact with someone who is infected you will not get the disease. In late summer...

I will be getting the vaccine when offered. Any side effects are better than getting the bug and it should make any infection less serious if I do catch it. We are not interacting with people except a weekly shop but that is still a slight risk. At our local hospital things are falling apart...

I have never heard that ME has "exercise-induced DRG pro-nociceptive molecules gene overexpression" Diagnosing FM and ME is very lax. One doctor said that the criteria for FM was now so loose it was almost meaningless and it in things like FND FM means widespread pain and CFS means fatigue...

If a treatment is shown to be effective for enough people it will happen naturally. The reason all their "cures" are not well accepted is not lack of publicity but because they do not work for so many people. Do very good clinical trials which show objective improvements in more symptoms than...

The early CFS people, like her, did not know about, or did not consider, energy problems or any of the earlier work on ME.

After orthopaedic surgery, many patients are reluctant to take adequate pain relief. When it is explained to them that taking pain killers will help them to move which will speed up their recovery so they will end up needing less analgesia in the long run they usually take what is prescribed...

Thank you again for discussing this, it is a vital thing for us. To state the case very baldly, the medical profession can't believe, don't know or don't accept the way that patients with ME have been treated by the so called experts. The analogy that springs to mind is the way black people...

I am not sure I understand the idea of using a wide net. The PACE trial was examining a treatment so any question of whether they were looking at a singe disease or many was surely important especially as they only looked at average outcomes not individual patient results. If everyone with a...

That is not what I meant, I was talking about day to day medicine. Doctors may not know much about ME but I should have been able to go to see a doctor and be asked what symptoms I wanted to talk about then they should have been noted including any changes from last time and if there was...

I have been thinking about finding symptoms and what to do and I realised that there is a fundamental problem underlying it all, which will come as no surprise. I was interested in how arthritis was parsed out which, of course, then lead to treatments and better understanding of the biological...

I have read that Michael Sharpe was part of the group at the CDC who defined CFS and Wessley was at the original conference.

The research into polio was held up for decades because the leading researcher in the US did not believe in infectious organisms. I think Dr Hyde gave up his license to practice rather than fight allegations and an awful lot of ME doctors have had allegations made against them. He is very...

There was talk about doing a study like this to see if mono ME was the same as enteroviral ME when CFS showed up and everything fell apart.