Trial By Error: A Sneak Preview of Next Week’s Post 27 DECEMBER 2017

Whilst this is true, and ideally a "Kur" is a 3-week holiday in a spa resort, you do not currently want to be sent on a 'cure' as an ME patient in Germany. You will be encouraged to exercise and be therapised. Until ME is depsychologised I'd be careful what you wish for in the 'Kur' department. I know people who have been sent on one (yes "sent", as in your claim for a disability pension will not be considered before you have been) and returned bedridden.

@Inara

 

Yes, one of the mums from a forum was told by someone who had had CFS that her daughter should do " absolutely nothing" for 3-6 months. She reckons this advice is priceless.
She also uses a herbalist for antivirals ( as noone will prescribe them) and sees good results from this. We of course have been told that Glandular fever does not " reactivate"!
School, authorities and general life make " rest" difficult.

I am sure i read somewhere, it may be frm @countrygirl somewhere, that by the time they were on top of the Royal Free incident, 6 months bedrest was the acknowledged best treatment. It would be excellent if there was documentation of this that could be unearthed

 

Bearing in mind I'm not the one with ME, my wife is.

I caught glandular fever when I was an 18-year old RAF apprentice, and it was taken very seriously - at the time I naively wondered what all the fuss was about. I was in sick bay for two weeks, then sick leave for another 3 weeks; I believe I got it quite mildly. When I got back it was pretty intensive catching up on my studies/exams, but I seem to have been lucky and recovered. Over the years I did wonder at times if it was coming back, feeling quite "spaced out / flaked out" at times, but I seem to have been OK by and large. I do remember being told to eat as much fresh fruit as I could during sick leave, so I got through vast quantities of apples.

I now realise it could have turned out far worse for me.

I think @Peter Trewhitt you could well be right. Our bodies may well still be undergoing vital infrastructure repairs some time after we have apparently recovered, and even after medical science deems our bodies are mended. Who knows, it might even turn out to be a double whammy, and if we catch something else before those vital repairs have completed, we may then be much more defenceless.

 

When you think of all the trouble they have freeing up hospital beds with people who do not actually need to be in hospital but cannot be at home alone, then convalescent homes seem like a good idea.

This rush back into activity is a plague of the modern world as far as I am concerned. Those ads for cold and flu treatments: when the going gets tough etc., separating the men from the boys....type slogans.

Great so you suppress some of the symptoms so these individuals feel well enough to go out and about and infect others, who then buy the remedies and go and infect still more people.

However, I agree with @TiredSam - I wouldn't go looking for this as an ME patient in the UK either. You would definitely get more than you bargained for

 

I remember back in the 1980s that adverts for cold and flu remedies in the UK didn't make any promises about making people well enough to return to work or school. They just claimed, at best, to make the symptoms more bearable while you recovered at home. It was against advertising rules of the time to make health claims that couldn't be substantiated, and in theory I thought that still applied now. However, you wouldn't think so if you watched a UK ad for such remedies now.

I remember reading an article (published in the UK, and comparing US and UK employment culture in relation to being sick) around that time that pointed out that advertising rules were much more lax in the US, that few people in the US got sick pay, that people could be sacked in the US for taking time off while sick and had no job security. Therefore pharma companies producing cold and flu remedies made claims that they could make colds and flu disappear because this is what people in the US wanted to hear. I don't know how accurate the article was, but for some reason I've never forgotten it.

Unfortunately, this attitude that being sick and taking time off is only for wimps has only benefited employers, I can't see that it has benefited employees at all.

 

The people I know that have been on a 'Kur' or cure have had very different experiences based on their condition and reason for going and the time period seems also to vary from the three weeks mentioned above to several months, but I know no one with ME who has experienced a German Kur. The German Kur can be for active treatment but I understand it can also be more like the traditional idea of convalesance where rest, a rural or seaside environment, gentle managed activity and healthy eating promote natural recovery.

However my point was not a cure as a treatment for established ME rather raising the question of whether convalesance might be a preventative for an acute condition triggering subsequent ME. Indeed I know people that have ME that attempted to create their own cure, which has either made no difference or resulted in only a temporary respite with relapse as soon as they try to return to premorbid activity levels.

However it may not be a feasible option to try to prevent ME by providing convalesance for acute infections, given we have no way of saying which acute episodes might trigger subsequent ME, nor do we know when the onset of the ME is. Did my own ME begin simultaneously with the onset of my glandular fever, during the course of the glandular fever or subsequent to the acute phase.

 

Enough of this "making sense!"

The people who could afford it would be sent to the seaside to rest and relax. This is part of the Spa complex in
Scarborough.



Nowadays, a GP cannot even get you a decent sick note without getting into trouble.

 

I think being present at school or work is considered to be far more important than anything else. But it probably depends on the job. Someone on an assembly line will not only have to be present but also capable of doing the job. Someone working in an office may be able to hide or disguise their lack of productivity for a short time. But in both cases I think people should be allowed to be sick and stay at home. Being sick isn't something to be ashamed of, it's part of being human.

I do remember when I worked in offices that I used to be absolutely furious when people came to work, coughing and spluttering because of viral illnesses, and all they did was snooze at their desks. But everyone seemed to feel that they were expected to do this.

 

Someone with a severe cold recently came into the area where the Invisible Man works. They coughed, sneezed & spluttered all over the place. Virtually everyone there asked them to go home. Nope. Sat there doing naff all and infecting everyone.

They had promised a manager they would cover a shift for someone else. It was a point of pride with them that they made it & were sticking it out (but not actually achieving anything).

While worrying about making himself look good he didn't know, or chose to ignore the fact that some people there had extra reason to avoid colds: the Invisible Man because if he passed it to me I would have an ME relapse that could last a month+, another colleague has a disabled child and a cold can have significant consequences for him.

I'm sure there are others loathe to infect their elderly relatives or young children.

 

I wonder if there is a higher probability a person might go down with ME if they take pain killers etc. during an infection, to help them to "push through" their symptoms? If you more readily ignore your body's warning signs, and take medication to help you do so, are you more likely to damage yourself, and sometimes the result be ME? Could the rise of over-the-counter pain killers have anything to do with ME prevalence, and the associated advertising that encourages their use so you can carry on regardless?

Could this (dare I say fellas) be why ME is more prevalent in women? Are women more likely (due to mind set and cultural expectations) to take pain killers so they can ignore their bodies' warning signs, and still push themselves after their bodies have been trying to tell them not to?

Have any studies been done regarding any of this?

 

I don't know any studies into this @Barry .

I can say that, in the early days, at the stage when I could no longer pretend to myself that how I felt was "normal" I relied on medications like paracetamol to try to control pain and prop me up.

It was only when I realised that these meds weren't working and I then had a couple of potentially dangerous accidents, while pushing myself to participate in my favourite sporting activities, that I finally consulted my doc.

So in some respects they hindered me as they delayed me seeking professional help. However, so did the "common sense" approach of trying to exercise my way out of it.

Of course in BPS speak these women would all be type A overachievers who are unable to handle the fact that they aren't perfect at everything and are converting this psych distress into physical symptoms.

 

I was just reading this Retraction Watch article on a Cross Fit study, and while I wasn't sure it was worth starting a new thread about, but seemed a bit relevant:

http://retractionwatch.com/2017/06/30/researcher-tangled-crossfit-loses-two-papers/