time for a tasteless thread

[dellzeqq]

http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis

I know this is not an adult response, but my first thought was - 'threatened by people who are falling asleep all the time - how frightening can that be?'

and my second thought, I'm afraid, was that the threats were, in some way, a vindication of the scientists' research.

 

[Arch]

http://www.guardian....cephalomyelitis

I know this is not an adult response, but my first thought was - 'threatened by people who are falling asleep all the time - how frightening can that be?'

and my second thought, I'm afraid, was that the threats were, in some way, a vindication of the scientists' research.

Sadly, there are nutters in every group of society, and people with CFS are no exception...

Also, I don't think any of the researchers are claiming that if there's a psychological aspect, it's necessarily psychotic, so your second thought is a bit wide of the mark.

Also, you seem to be confusing CFS with narcolepsy. Being fatigued doesn't mean you necessarily get to sleep any more than normal.

 

[theclaud]

threatened by people who are falling asleep all the time - how frightening can that be?

FNRttC breakfasts are clearly a terrifying ordeal for some...

Surprising article and interesting topic- not just M.E. but the idea that it it some kind of slur on the sufferer to suggest that there might be a psychological component to any condition. It's not just clinical conditions either- people seem to lap up essentialist medical/biological explanations of why they are like they are, and distrust social/psychological ones. I agree with your second thought...

 

[ColinJ]

It's a really controversial subject and I have to watch what I say for fear of upsetting certain people, but I wonder if what actually happens is that a sufferer starts off with an illness that knocks the stuffing out of them and has them laid up in bed for several months.

After that, they are actually on the mend but are very weak from the after-effects of the illness and from lack of exercise. When they finally do try and get out of bed they feel really exhausted, think they are still ill and go back to bed to recover. Of course, that makes things worse and the weakness deepens...

When I was 9, one of my classmates became seriously ill. I can't remember what was wrong with him but he disappeared for a year. I was told that he was in hospital but I didn't see him again until 12 months later. When he finally came back to school, he looked awful. In those days, I don't think there was the same emphasis on physiotherapy, and getting patients out of bed whenever possible. He had basically been left to wither away for a year. His legs looked more like the size of my arms and he was on crutches and was having to learn to walk again. It took him the best part of a year of struggle to build his strength back up. It would have been very simple for someone to persuade him that he was still ill, and to send him back to bed.

Having said that, I've had some sort of bug 3 or 4 times in the past 20 years which left me feeling exhausted, without otherwise making me really ill. I had it once as a student. I got back from university one evening and was so tired that I laid down on my bed as soon as I got in and slept for 14 hours. I normally sleep for 6 or 7. For a few weeks, it was all I could do to walk slowly and read a few books. Perhaps ME sufferers have something like that but for some reason never recover from it? The only thing is - if so, why can't doctors detect the virus (if it is a virus) responsible?

You can understand why people who feel absolutely wretched (or who have loved ones who do) don't like being told that they might not actually have a physical illness, and that it could be all psychological!

I'm convinced that the vast majority of ME sufferers genuinely are physically very weak, but I wonder how many of them could regain their strength if they worked with very skilled physiotherapists and nutritionists to build their strength back up again?

 

[Arch]

You can understand why people who feel absolutely wretched (or who have loved ones who do) don't like being told that they might not actually have a physical illness, and that it could be all psychological!

And that's the problem. You may not mean it, I'm sure you don't, but the implication in that sentence is that a physical cause is 'real' and a mental cause is 'made up, and you can sort yourself out'.

Psychological illness is still illness, as much as physical illness. Plus, psychological illness can cause physical symptoms.

Most people nowadays have got past the stage of telling a depressive to snap out of it, but unfortunately when it comes to CFS, too many people don't get it, so it's understandable that there's a certain amount of stigma attached to the idea of a psychological illness.

That said, these people making threats are... Well, I probably shouldn't say 'nutters' but.... As I said before, there are always going to be extremists.

 

[ColinJ]

And that's the problem. You may not mean it, I'm sure you don't, but the implication in that sentence is that a physical cause is 'real' and a mental cause is 'made up, and you can sort yourself out'.

No, what I meant was that if you believe that you are weak because you are physically ill with a mystery virus that medical science hasn't yet tracked down, then there is no hope until the scientists find a cure for it, so until then you probably won't get well and there wouldn't much point in trying.

If in fact you were actually weak because you had previously been physically ill and spent too much time in bed and what your body needed now was to be gradually brought back to health by a very carefully monitored exercise and nutrition programme, then it would be a mistaken belief that was the problem. That's not a mental illness, that's a misconception and encouragement and information can put that right.

If you were actually physically well, but you believed yourself to be weak, then that's what I would call a mental illness.

I don't know what the reality is for any given individual. There probably are some people who could get well again if they only believed that and went about it the right way. I'm sure there are others with 'real' but obscure physical illnesses who might not get better until cures are found. The third group who don't have physical illnesses but believe that they do, need help with their psychological problems.

I wouldn't tell anybody with a problem to just 'snap out of it'. I've been depressed on and off for years and it has never helped being told that I don't have a problem! Nor does it help to be told that there is a problem but don't worry, it is easy to sort out.

 

[Arch]

No, what I meant was that if you believe that you are weak because you are physically ill with a mystery virus that medical science hasn't yet tracked down, then there is no hope until the scientists find a cure for it, so until then you probably won't get well and there wouldn't much point in trying.

If in fact you were actually weak because you had previously been physically ill and spent too much time in bed and what your body needed now was to be gradually brought back to health by a very carefully monitored exercise and nutrition programme, then it would be a mistaken belief that was the problem. That's not a mental illness, that's a misconception and encouragement and information can put that right.

If CFS were just a case of being physically weak all the time, that might explain it - but it's not. People have good days and bad days.

I do see what you're saying - definitions are very fine lines, and I don't for a minute think you're casting aspersions, I just think, from my limited experience*, that it doesn't quite fit in this particular case.

*A couple of years of having a best friend/boyfriend suffering from it.

If you were actually physically well, but you believed yourself to be weak, then that's what I would call a mental illness.

I don't know what the reality is for any given individual. There probably are some people who could get well again if they only believed that and went about it the right way. I'm sure there are others with 'real' but obscure physical illnesses who might not get better until cures are found. The third group who don't have physical illnesses but believe that they do, need help with their psychological problems.

I wouldn't tell anybody with a problem to just 'snap out of it'. I've been depressed on and off for years and it has never helped being told that I don't have a problem! Nor does it help to be told that there is a problem but don't worry, it is easy to sort out.

No, I know you wouldn't, and these days I think most (or at least many) people wouldn't, because depression has become less of a taboo subject, and more and more people know someone who's suffered, so they understand better. Sadly, CFS is lagging behind in that regard, and there are plenty of people who ought to know better, intelligent people, who like to think it's 'all in the mind' and that 'all in the mind' means made up - whereas an illness can be 'all in the mind'** and seriously affect a sufferer physically.

**By which I mean doctors can't find a physical cause. It doesn't mean it doesn't exist, it just means we're not clever enough to see it yet.

 

[ColinJ]

If CFS were just a case of being physically weak all the time, that might explain it - but it's not. People have good days and bad days.

Actually, that's true (also from my relatively limited experience of it - second hand knowledge).

I'm amazed that scientists haven't at least found some basic physical signs of the condition even if they didn't know what caused them. You'd think that they would see irregular blood sugar levels, red blood cell counts, hormone levels or something!

 

[dellzeqq]

Actually, that's true (also from my relatively limited experience of it - second hand knowledge).

I'm amazed that scientists haven't at least found some basic physical signs of the condition even if they didn't know what caused them. You'd think that they would see irregular blood sugar levels, red blood cell counts, hormone levels or something!

and that, of course, is the essence of the thing. Having not found anything, scientists are bound to start looking everywhere.

 

[Zoiders]

A long time female friend recently went down in my estimation when she started linking on a certain social networking site to web pages and articles claiming that the immunisation of children is responsible for childhood illness and behavioural disorders.

The idiots seem to be trying to reverse engineer the science that points to affective disorders and stress being known to suppress the immune system - they have decided that it's the "poisons" in the vaccines making kids dysfunctional and prone to infection - god forbid their kids could simply be slightly less perfect than they expected because of the odd bad gene.

It's all a bit Monty Python-lets see if you weigh the same as a duck for my tastes.

 

[Arch]

Actually, that's true (also from my relatively limited experience of it - second hand knowledge).

I'm amazed that scientists haven't at least found some basic physical signs of the condition even if they didn't know what caused them. You'd think that they would see irregular blood sugar levels, red blood cell counts, hormone levels or something!

Thinking about it, are there other things that don't necessarily have physical signs like that? Migraines, from my limited understanding - sometimes there are triggers, I know, but sometimes there aren't and I don't know if doctors can see physical signs like the ones you mention. Maybe a brain scan would see something, I don't know enough about them.

The human body, like any animal, is so complex, looking for a single interplay of so many potential factors is like looking for a needle in a haystack. Suppose it's this hormone level, but only if that sugar level, and that other red cell count that need to coincide, but only if this that or the other nerve connection is firing...

Plus of course, the condition varies from sufferer to sufferer - it might even be a range of conditions, which all tend to have the same basic effects. So once you suggest a reason for one person, the next might not fit that pattern...

Given that suffering can make people depressed as well, I guess it's not surprising if some resent the idea that it might be yet another thing wrong with their brain. But trying to harm the researchers looking for a solution is no more hinged than the nutters who released mink, which then merrily chomped through the watervole population - short sighted to say the least....