United Kingdom: Science Media Centre (including Fiona Fox)

There is an interesting passage on how she helped the poor PACE chaps to counter the suggestion that PACE and XMRV were equally bad.

The most striking thing that comes across reading the intro and the ME chapter is her complete lack of engagement with the content of the science nd its quality. She has no more clue than a newbie Guardian journalist told what to do by Sarah Boseley.

It is quite a remarkable exercise in getting up one's own arse too. Self-congratulation is nothing compared to this self-righteous drivel.

I also like that she quotes David saying PACE is crap but not the final arbiters NICE who said PACE is crap.

There is nothing naive here. It is all manipulation. The title of the ME chapter is carefully crafted manipulation. I am sure the psychotherapists would have something to say.
 
Lucibee said:
The chapter on ME/CFS is entitled: "First they came for the communists..." :eyeroll:
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Actually it could be said of Fiona Fox and her gang that "First the came for the communists", then they went for everyone else:

The organisation began in the late 1970s as a Trotskyist splinter called the Revolutionary Communist party. It immediately set out to destroy competing oppositionist movements. When nurses and cleaners marched for better pay, it picketed their demonstrations.(1) It moved into the gay rights group Outrage and sought to shut it down.(2) It tried to disrupt the miners’ strike,(3) undermined the Anti-Nazi League (4) and nearly destroyed the radical Polytechnic of North London.(5) On at least two occasions RCP activists physically attacked members of opposing factions.(6)
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https://www.monbiot.com/2003/12/09/invasion-of-the-entryists/

And accusing groups they set their sights on of being Nazis is a tactic they've been using for the last couple of decades:

In the late 1990s, the group began infiltrating the media, with remarkable success. For a while, it seemed to dominate scientific and environmental broadcasting on Channel 4 and the BBC. It used these platforms (Equinox, Against Nature, Attack of the Killer Tomatoes, Counterblast, Zeitgeist) to argue that environmentalists were Nazi sympathisers who were preventing human beings from fulfilling their potential.
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The most fascinating thing about this book is that it does not go "beyond the hype" at all. It is *all* hype.

There is no examination of the controversial issues themselves. No understanding of what the source of the controversy might be. No explanation that maybe it is because of differences in values or ethics (in the case of animal or plant research). Sometimes it genuinely might be because a particular area of science is not adequately explained to the public, and that gives rise to myths and misinformation springing up. But equally, it may be because of competing interests of a different sort. But because she takes the (extremely naive) view that the scientist is always right, and just needs help to explain their science to the media and everything will be tickety boo, she misses the point.

She even goes so far as to ask the question: "But what are these activists so upset about?"

And admits that, "I can't claim to fully understand their grievances but they appear to object to the fact that many of those involved in researching and caring for ME/CFS patients are psychiatrists, psychologists or behavioural scientists..." and then it's the same old same old.

She doesn't once mention the harm that has been experienced. Despite having had ME herself, she doesn't seem to have spoken to anyone else affected by it, unless, like her, they have recovered.
 
chrisb said:
The " First they came for the communists..." quote.

Could it by any chance be a reference to the Revolutionary Communist Party?
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It's a poem by a German pastor published in 1946, about how the Nazi regime disappeared one group of marginalized people after another, until all that was left were good Germanic/Aryan Nazis.

First they came for the socialists, and I did not speak out—
Because I was not a socialist.

Then they came for the trade unionists, and I did not speak out—
Because I was not a trade unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.​

It can't be missed that it begins with "first", even though that's all there is. In her title, she is basically saying "first they (we, the ME activists) came for the psychiatrists", who literally suffered nothing but having to do more paperwork, by their own admission.

If there's a first, there has to be a second, even though there isn't any. Basically this "beyond the hype" book is nothing but hyped controversy drummed up to sell. Complete moral bankruptcy.
 
Trish said:
I thought it was a sister who had ME.
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She's defo describing her own experience. She says she had some kind of post-infection fatigue after a trip to Zaire in her thirties. Spent weeks in bed; going downstairs too exhausting; kept being asked whether she was depressed - adamant that she was not; emotional lability etc. Eventually started to get some energy back "after numerous frustrating and inconclusive visits to different doctors." Took about a year to get back to normal.

She says that the experience gave her "a tiny insight into just how miserable and isolating ME/CFS can be." Which is why, when she started at SMC, she says she "was interested to meet the scientists working in the field and talk to them about any exciting advances being made..." "What I found was a nightmare: a small and beleaguered group of scientists who, despite years of working in their field, were all to various degrees contemplating leaving because of harassment by a group of vocal activists."
 
Lucibee: "She says she had some kind of post-infection fatigue after a trip to Zaire in her thirties. Spent weeks in bed; going downstairs too exhausting; kept being asked whether she was depressed - adamant that she was not; emotional lability etc. Eventually started to get some energy back "after numerous frustrating and inconclusive visits to different doctors." Took about a year to get back to normal."



That's nothing like what Fiona Fox wrote about ME in (circa) 1996.
Did she go to Zaire, get ill, then take a year to get back to normal sometime between 1996 and 2001, when she became Director of the SMC?


@Lucibee - I do suggest you read this internal RCP 'Contribution to our Tasks and Methods' by Fiona Fox in which she makes it clear she thinks ME is something only suffered by the likes of her "old friend Carol", people who have given up on their ideals and given up on hope, and become pathetic.

fiona_fox_ME_RCP_with_links.pdf (dropbox.com)
 
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Oh, so Fiona Fox herself, her sister, and her "old friend Carol" all suffer/suffered from ME. I would have thought she would want more than rotten old useless CBT/GET for her nearest and dearest.


So Fiona Fox now has a bigger audience for her post viral fatigue of a few months, during which she was looked after by her parents, then felt "horribly tired" but got back to work after a few months, than the vast majority of ME sufferers ever have, bedbound for years/decades, many are never looked after by anyone.
 
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