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I am on this forum a lot (!) but I would not like to be asked what I want from a service without discussing it here. I need other people to point out problems and meanings because my thinking has deteriorated over the decades. I remember a piece of research, maybe a service review, that had...

So that "may" - a word that means there is no evidence, just an idea - is enough to tell patients they have a mental illness. You would think a brain injury causing brain symptoms would be the most likely explanation.

But we know what causes interstitial cystitis, it is a functional neurological disorder, commonly known as hysteria. What a waste of resources to look at anything else and making those poor patients sicker by doing tests that could confirm their erroneous belief they have a physical disease...

MS has fatigue, but it does not have anything like the PEM we get. If EBV does have an involvement with ME for some people this sort of thing might help but not because of any similarity with MS.

That is outrageous. It calls your professional competence into question and needs to be addressed. I would think you had a legal case against them. What sort of person says someone has made basic errors and then refuses to say what they are and what sort of person would condone that...

Yes and it is strange that we antiscience patients are wanting research into mitochondrial function while the royal collages are defending the Lightning Process.

This highlights the problem with CPET testing - the risk of permanent deterioration. The experiments which would answer many questions would be unethical yet because the psychologists do not believe there is a physical problem in ME they feel perfectly happy pushing patients into permanent...

Problems with dorsal root ganglia have been found at autopsy in people with ME.

Interesting. I love genetics, it is like quantum theory, they show that science is not nearly done with explaining the universe.

In genetic mitochondrial disease all mitochondria will be affected but in ME it is most likely that the mitochondrial dysfunction, whether it is in the mitochondria themselves or slightly further down the line, is only in some cells of the body. It could explain the differences. Of course, I do...

Bad research and twisting of all results to be positive is letting them claim this high success rate. It would take a hard hearted paediatric doctor to refuse the treatment. No wonder parents are threatened with removal orders if they do not agree.

The other side of this is that there is always the media ready to pounce and a politician ready to be scandalised that their opponent has let something so awful happen. It makes it impossible to have a proper discussion of what is going wrong and fiz things so it doesn't happen again. Think of...

It is like talking to a rock.

You have described it so well Jem

Such things may affect metabolites but people are sent for single CPET tests every day and the results are taken as evidence of heart disease or lung disease with no one worrying about their mental state. The protocols for annual testing of Cystic Fibrosis patients does not say anything about...

This is not anything worth worrying about. People with ME want a test that will give proof that something is going on to show they are not imaging they are ill. I doubt if it is possible for someone who has not experienced it to know how it feels to be made to doubt yourself for decades, there...

OK I may have got this wrong but I think they are saying that they found a correlation between adverse experiences and anxiety/depression. They also found that adolescents who experienced somatic symptoms had a correlation with anxiety/ depression. When I became ill with ME at 14 I was anxious...

When Workwell did the first studies they commented that the controls complained on the second day but the ME patients "would have walked over burning coals to get proof they had a physical disease" With ME you are always doing things you do not feel well enough to do. It is one of the worst...

I liked the way it was written. Everything was described the way it actually was from our point of view (the truth!) I am used to writings about ME being respectful, in the Parliamentary "My learned colleague is an idiot" sort of way, or falsely even handed so it is seen as a a difference of...

ME is not "all-consuming fatigue" it is a problem with energy production and an unusual response to exertion. That may give someone all consuming fatigue but only in the sense that people with MS get fatigue, one symptom among many. Taking away fatigue would be good but we would still be left...