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Twenty odd years ago MS patients were not told their diagnosis as it was thought no one would want to know that they had a lifelong disease with a serous risk of severe disability. Patients complained (many of them found out by accident from locums for instance) and they got their way with an...

I have been thinking about this, what exactly is ME and how does it relate to other enteroviral infections. I am probably one of the few people on the forum who experienced a polio epidemic so grew up with people who had the braces and other problems. Now with post polio syndrome, they do not...

Yes, indeed. The phrase is used without being defined in most cases and the spectrum is very wide. The consequences of the abuse are very diverse as well. They are taking something that is incredibly complex and making it a box ticking exercise to give a number they then use to explain...

Type I, II, and III polio are just names for different enteroviruses. They are all very similar but these are the ones which were included in the polio vaccine as they were the commonest cause of the epidemics. Enteroviruses which have different names, rather than just numbers are just an...

When the Kreb's cycle is saturated so it cannot take in any more of the pyruvate being produced by the anaerobic chemical reaction it builds up and damages the mitochondrion. The waste products from this destruction signal the cell to produce more mitochondria. The different levels of...

edited, unfortunately, my ME brain wrote basal ganglia instead of brainstem. I have corrected it now. (the basal ganglia are involved with speech and movement disorders such as parkinsonism and may be damaged in some people with ME as well) Years ago, before CFS, one of the symptoms of ME was...

While moderately affected by ME - by evening I had to be helped upstairs, had episodes of paralysis, inability to speak and blindness - I walked briskly for at least 50 minutes everyday taking kids to school and nursery, shopping, going to the park, as well as housework and gardening. I was...

See Nick Lane's books on mitochondria. Sports physiologists are not so knowledgeable about biochemistry and cell bioenergetics.

I am desperate to exercise. I envy my aromatherapist who goes to the gym every day despite being 66. If the BPS crew had not hijacked ME research and understanding in 1985 I might be active too. And they have the brass nerve to then blame me for being sedentary when their medical neglect let...

I presume the the table is of things they scored then they find the total and say this is meaningful. If I have read it wrong, sorry. The problem I see is that they are not independent things. If you are being physically abused it would be a miracle if you did not feel worried, anxious...

There is a limit to how much aerobic capacity a cell can have. Aerobic exercise, when the cell switches to anaerobic respiration, increases fitness because the mitochondria die which is a signal to the cell to make more of them so there will be a greater capacity for aerobic respiration. We call...

They justify it by saying that anyone who is actively ill with anything should not give blood because it is potentially dangerous to them, not because people with ME actually have a physical disease, perish the thought. The slight feeling of fatigue anyone gets after donating blood would send...

I agree that trials should never be based on things like the SF36, they are not objective enough. I may be remembering it wrong but I think that scale was designed to help doctors track how well cancer patients were doing, not as a research tool. What I meant was that trials which rely on...

Using patient self report in a trial is always subjective but in ME the situation is even worse. The SF36 gives numbers you can add up with a yes or no for each section so has a certain objectivity. Patients are asked if they can do things or not so the answers should be some reflection of...

I think it can be called a behavioural therapy because they will suggest behaviours like saying "no" or help you role play what to say to someone who says you look well. If I was newly diagnosed with a chronic disease I would expect the therapist to know better than me the things that could help...

I apolgise, I used the wrong term. When I was a microbiology student in the early 70s and in general, it was accepted that some infections left people feeling ill and fatigued for months, especially things like flu and that glandular fever could take a long time to get over. I am not sure if...

In ME, the important measure is how quickly performance deteriorates. No one seems to look at that properly but it is the crucial thing that I believe defines ME as opposed to other fatiguing illnesses. It is neglected because of the perception we are deconditioned. When I was first diagnosed...

I think that PVFS has been made the same as ME since CFS was used for both. That is nasty but doesn't last lifelong the way ME does and is a different disease even if it can lead to true ME. EBV was also known to take months if not years to resolve but again it can lead to me but the prolonged...

I can't get it to copy but in the above table under no persistent infection it lists polio virus and Coxsackie B virus which is very strange. The enteroviruses are very closely related (medical labs only test for enteroviral species using a generic PCR) They cause cardiomyopathy and a lot of...

Carefully omitting enteroviruses despite epidemics of enteroviral infection being the basis for the name myalgic encephalomyelitis. Never let it be known this illness came in epidemics because that is proof that they do not have psychological causation.