Discussion in 'General ME/CFS News' started by Sasha, Nov 10, 2017.
According to the ME Association on FB:
Good point - might be good even for their younger relatives to get in touch.
292 staff were affected and 12 patients. Anyone in their 20s at the time will now be between 82 and 91, so it's likely some will be alive. Plus there were other staff and patients who would have been 'involved' even though they were not affected.
In last night's Q&A following the Leiden screening of Unrest, David said he'd spoken with a GP who'd got sick in the outbreak - now in her 80s - who had followed instructions to rest fully for six months and had made a full recovery.
Wish that advice hadn't been lost over the years.
I agree with that, but we would still have to establish that there are no people around who underwent the six months rest therapy but continued to be ill anyway.
You'd also need a control group of healthy people to rest for 6 months and study their condition before and after. Should be able to find plenty of volunteers for that group.
A relative who had glandular fever in the 1950's was prescribed 12 weeks complete bed rest, this was at home, not hospital. She made a complete recovery. I wonder if that thinking was more common in those days.
When I had GF in 1980 things had changed a lot. I wasn't allowed to be off work after 8 weeks even though the symptoms I had a 9 weeks were the same as at 8 weeks, they suddenly became unacceptable and not caused by the infection. I was told categorically that you couldn't be ill with GF for longer than 8 weeks, not possible. Mind you the GP had been awful for the first 8 weeks too!
One troubling aspect of the Royal Free literature is the comment in the 1978 Compston paper http://pmj.bmj.com/content/postgradmedj/54/637/722.full.pdf
that two years after the outbreak only four patients still presented marked physical disability and a small number manifested prolonged depression.. It would be interesting to know whether this comment merely represents an inadequate state of knowledge, due to poor follow up, or whether it is an accurate description of the situation.
One strange fact that I have recently noticed is that McEvedy and Beard announced to the world their expertise on the subject in January 1970 yet there seems to be no indication that they ever offered a view on the epidemic which occurred between August 1970 and January 1971 at the Hospital for Sick Children. One might have thought that their expertise would have been much valued by Dillon and his team. They might even have been able to obtain first hand experience.
Keith Geraghty tweeted this link:
Prof. Behan talks about the Royal Free outbreak.
With things like the Royal Free outbreak, it seems so difficult to work out what happened, that I can feel wary of giving them more weight than they deserve in attempts to understand today's patients' ill health. Having said that, I can also understand that those who fell ill as part of an outbreak and are still disabled are likely to feel that more attention should be paid to trying to work out exactly what happened them.
That was the advice that my doctor gave me and after four months my ME was much worse.
A family across the street from me when I was growing up had mono and the two eldest girls were off of school for six months.
I'm really wary of giving anyone any advice. It seems everyone can respond to different things in different ways, and are often best off just finding their own way.
i.e. A properly designed and run study.
But the problem is the medical and benefit systems don't allow you to find your own way. You have no choice in the matter.
I'm as sure as I can be that if I had been allowed to be off work for long enough with GF then I would n't have come down with a second virus, Coxsackie B3 later that year. Then I wasn't allowed to get over that virus, having to push on working until my health finally collapsed.
So true. We've created a society where the sick are expected to do as they're told by 'experts', even when the 'experts' are talking rubbish.
I was given two weeks off work (in the 1990s) and told that I'd be back to normal after then. When I returned to the doctor after 3 weeks and told him I was still ill, I was told that this was 'impossible'.
That's really awful, I'm sorry x
Thank you, @Daisymay . My flatmate also came down with EBV some weeks later and was very ill for at least 4 weeks. Her parents came to look after her and her father mentioned that he'd been sick with EBV for over 6 months when he was younger and had "never been the same since".
It was a relief to be vindicated somewhat and to learn that doctors really don't know what they're talking about.
I think the bed rest or at least stop work altogether for 6 months may be right in some circumstances. If the person has had a very bad viral infection and is ill for a few weeks.
I haven't to my knowledge had glandular fever. I had a nasty bout of chicken pox but I don't remember having difficulty recovering from it I may have been off work for 3 weeks. I then maybe 15 years later started having a lot of viral flu type illness/laryngitis. Again a few times I was off work for 3 weeks. But I don't think it would have been possible to identify a time when I should have been picked up as having ME and needing to take much more than normal recovery time.
Obviously in the ideal world with a bio marker anyone with recurrent viral type illness could be tested to check its not the onset of ME. Maybe it will become routine to test everyone after EBV chicken pox etc
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