'Believe ME' | BBC Horizon, 27 June 1988

InitialConditions

InitialConditions

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Recently uploaded to YouTube.

This was uploaded in 2021 by a different user, but was taken down shortly after due to copyright.

"To be told 'your illness is all in the mind' or 'pull yourself together' is no help to people like Mollie Champion -14 years seeking a diagnosis and still not cured, or Michael Mayne. 'Post-viral syndrome' 'Yuppie 'flu', 'Royal Free disease', or 'myalgic encephalomyelitis', has divided medical opinion for over 30 years. Now, thousands of patients are struggling for recognition of this distressing condition, while fighting the fundamental attitudes of doctors to diagnosis and disease. But as some patients suffer, others try a fresh approach: independently of their doctors."

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DigitalDrifter said:
Can some body please summarise this video for me? What were the psychs / BPS saying back then? Was there any biomedical research? How severe were the patients? Was PEM described or even mentioned?
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This pre-dates the BPS school (as applied to ME/CFS). The psychs were saying no organic illness and basically blaming epidemic spread on hysteria or similar. Yes, there was biomedical research by Ramsey / Dowsett etc; in the film it shows a potential blood test to look at evidence of enterovirus persistance (if I'm not mistaken). The term PEM isn't used, because, again, that is a more modern concept/terminology. With Ramsey and co the emphasis was on muscle fatiguability.
 
DigitalDrifter said:
Can some body please summarise this video for me? What were the psychs / BPS saying back then? Was there any biomedical research? How severe were the patients? Was PEM described or even mentioned?
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To me it seemed like there was quite an emphasis on muscle weakness and pain by doctors like Ramsay, less discussion about debilitating fatigue/ weakness/ illness feeling. Don’t think I heard any mention of sensory sensitivity to light, sound etc.

One psych says that women are sensitive souls who were “nicer than men” and therefore took on the anxiety of being worried about their friends and colleagues and became sick themselves. In the voiceover immediately following this piece, it points out that half of the Royal Free outbreak were in fact men.

Interesting to see all the enteroviral discussion. Did that all come to nothing?
 
Oh my! Where does one start?!!!

I've come across people who say they've recovered from ME, but with a bit more digging I find out they have to continue to keep a tight rein on their schedule, and rest quite a bit. IMO opinion that's not recovery - that's management.

Another point that was not brought out at all was that there was an ME epidemic, for lack of a better term in an army barracks with all males.

Interesting to know that I am at once kind, caring and sensitive, and on the other ambitious, aggressive, and competitive. Either way, or both, that's why I have ME. :banghead:

The enteric info was interesting. Testing for that was curtailed early on in Canada.

About a month before a repeat flare up of EBV, I had a "stomach flu". After that, I gradually became increasingly debilitated.

Terrible, that in some ways we have not come very far from that 1988 program.

ETA: we have more research - yes, but public and health care workers' attitudes and opinions are slow to change. I still feel very much on the defensive, as one of the pwME in the program said.
 
Braganca said:
To me it seemed like there was quite an emphasis on muscle weakness and pain by doctors like Ramsay, less discussion about debilitating fatigue/ weakness/ illness feeling. Don’t think I heard any mention of sensory sensitivity to light, sound etc.

One psych says that women are sensitive souls who were “nicer than men” and therefore took on the anxiety of being worried about their friends and colleagues and became sick themselves. In the voiceover immediately following this piece, it points out that half of the Royal Free outbreak were in fact men.

Interesting to see all the enteroviral discussion. Did that all come to nothing?
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There was an acknowledgement that people could feel fatigued but that was seen as something that happened with illnesses. It was the CDC which brought in fatigue as a characteristic. Muscle weakness was being studied because that is the first thing you look for in a disease where exercise made people worse, Cellular energetics was in its infancy and I am sure that would have been explored if ME had been left in the hands of ME doctors and researchers.

Malaise, in the sense of a flu like feeling, that is a problem with the immune system, was an accepted part of the disease and swollen lymph glands were considered common after exercise. Pain is the myalgic part of ME and was seen as severe and burning.

Enteroviruses were part of the epidemics and the vp1 test was finding virus particles in people with ME just as the psyches took over which was so frustrating. Titres for enteroviruses were high in patients who were tested but there was not enough done before ME was killed off.

Basically ME was seen as a problem with exercise, pain and enteroviruses. CFS was considered fatigue and immune problems by US doctors who did not communicate with UK ME experts and treated CFS as a new disease - like long covid and ME. And it was all EBV not enteroviruses (because the CDC had EBV experts) even though they found that EBV could not have caused the Tahoe outbreak.

The CFS definition did not give much prominence to the severe pain of ME so suddenly people in the US were told they had fibromyalgia as well as CFS which has added to the confusion over the years.

Enteroviruses have been treated very strangely. It is hard to understand but the "covid is over now we have vaccines" makes it easier. The thinking, even if not explicit, seems to have been that enteroviruses are common, the only one with dangerous complications is polio and we have a vaccine for that. And this was at a time when infection in general was seen as being conquered and not so important. Medical training was 2 terms one day a week in the 70s down to 1 lab day and 2 lectures now.

In the US it was even worse. It took years for prominent medics to believe that enterovirus caused polio and even recently the CDC took years to accept that an enterovirus was causing a new disease in children.

I met one of the people who found there was no evidence ME was caused by enterovirus but he did not seem to realise that polio was a simple respiratory virus and polio was a complication that some people got so I did not have much confidence in his findings.

People have been posting some of the things that were published at that time and is is shocking to see they were every bit as bad as I felt they were at the time. It was bewildering how quickly it happened. It was an invasion with no thought for the devastation it left behind.
 
The section about Michael Mayne's experience of antidepressants is particularly interesting.

Narr: “In Michael Mayne’s case, the body needed a bit of extra help.”

MM: “I was given eventually some pills – an antidepressant – and I said, but I haven’t been
depressed, I’m one of the lucky ones who hasn’t been depressed with it. And I was told, no, it
doesn’t mean depressed in this sense. It’s the whole immune system, as it were, that needs
stimulating. And I did… I started having these pills in September 86, and I’m still actually on them,
although I’m only on one a night now, and there’s no doubt they’ve helped.”

Narr: “The Dean of Westminster isn’t alone in finding antidepressants helpful. But if this is a physical
disease, not a psychological one, how might they be working? It has to do with the enteroviruses
that have been implicated in ME. Studies on the brain tissue of suicide victims suggest that a state of
depression is linked to a shortage of an essential brain chemical, a neurotransmitter. The virologists’
theory is that, in some people, the enterovirus causing ME, known to have an affinity for brain as
well as muscle tissue, upsets the balance of these neurotransmitters when it reproduces, and thus
causes an organic depression. By treating that depression, the theory goes, the body’s immune
system becomes stronger and more able to fight off the virus, so sufferers get better. Whatever the
mechanism, antidepressants are helping a number of patients, but some need a more unusual
approach.”
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I'm not sure whether the neurotransmitter theory is actually that relevant anymore - my experience of them is that the main side effect was to increase blood flow to the extremities (they completely cured my Raynaud's for a while), I'm guessing by acting on microvasculature. If that's the case, then that might also work to counter POTS, brain fog, etc? Didn't help the depression at all!
 
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