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That I can believe!

I worked with a lot of people who had suffered extreme trauma in childhood. Many of them became much more balanced as a result. They did not worry about a few extra pounds or if they had a bad hair day. They were confident because they were proud of how they had survived. It is similar to the...

I was always amused by the "no donations if you are from the UK" and bans on British beef. The UK tested it's beef and had regulations, other countries were BSE free because they were careful not to test for it. But then I am very cynical... And I could drive myself crazy worrying about...

If you can take it, massage is excellent for ME. It has kept me mobile (not walking much but just able to move). My body wants to curl into a ball as all my muscles tighten up. It also helps with the pain. I wonder if we would benefit from passive movements to stop muscles becoming spastic...

An unexpectedly high number of victims of the Lake Tahoe outbreak developed non- Hodgkins lymphoma. That was the reason they investigated XMRV. if I remember rightly, it was the ones who were positive for EBV during the outbreak who were most likely to become ill. Whether it is common in the...

In 1986 Melvin Ramsay published his book on ME where he states categorically that exercise makes ME worse by definition and so by definition if it cures people they cannot have had ME. Around the same time the ME Association had articles talking about the ceiling effect in ME where people can...

Studies done at Ninewells Hospital Dundee found that elastin, which makes blood vessels supple, is wrong in ME. They found that the patients had more rigid blood vessels.

Ramsay spoke about the variability of ME as one of its defining signs. Relapsing/ remitting could simply mean that symptoms are not the same all the time. I can see fine this morning, maybe not tomorrow. This evening I could have a bad headache, yesterday I had to spend the afternoon in bed...

The symptom list for ME is a mess and has been made worse by design. Even back before CFS a friend put up a poster for me about the local self help group. He said that everyone who looked at it said they matched the symptoms. Ask anyone at random if they feel fatigued, if they have unrefreshing...

Exactly. They can't let the PACE trial fail or the truth about MUS and FND come out.

It all comes down to chronic fatigue as a synonym of CFS which they say is the same as ME. Most people would like more energy and these sort of courses may help people reorganise their life. But we are right to question what good they are for post infectious, sudden onset, neurological ME. If...

This may be classed as politics so remove it if needed. There are people desperate to make a profit from the NHS and people ideologically opposed to socialised medicine but the British people love it. It is being sold off bit by bit - like diagnostic labs are now private companies. When all...

I think the healthy/ unhealthy line is the one. Way back I had this. I was able to pass as normal, even my friends did not know I was ill. My ME did not stop me doing things it just stopped me enjoying them as it was a struggle! Some days I felt fine but those were the days when I ended up in...

Sometimes I think our results are normal because they are so wrong! For instance I tend not to fall over during a romberg test (closing your eyes) because I am so bad I fall over when I blink so I have trained myself to feel the ground through my feet. Relevant to these results this way...

This is all the wrong way round anyway. What is lacking is basic research into the normal biology of cells and energy production. If the complete biochemistry was known it would be much easier to see what is going wrong with us. That research could be done on planarian worms or fruitflies.

That sounds very good and I would like to be wholehearted about it. I would be reluctant to tell anyone I did not think they had ME but there are good reasons why we have to consider the matter. 1. There is a script for selling "treatments" to us. It goes "I was very sick, bedridden, in a...

I am finding it difficult to explain what I mean but medical professionals who became ill were felt by their colleagues as just not being up to it, basically losers who were not able to keep up the pace. The long hours as junior doctors and so on were almost an initiation rite if you see what I...

I think she is confusing fatigue with sickness behaviour which was a valid thing until it was psychologised. In humans and animals infections and hurts often lead to a specific set of behaviours involving hiding and lying down. There are changes in the body too which is why people go off food...

You're right, I was getting confused because SW and mates insisted the ME was actually neurasthenia as seen in Victorian times. I can only say that Ramsay was still seeing new patients and working to get better treatment for them in 1984 when I was diagnosed (16 years after I became ill!) he...

Why would HERVK be overexpressed in the moderately affected but not the severely affected? It just seems strange.