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Daily Mail:Chronic fatigue victims 'suffer fear of exercise':

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I used to love running, cycling & swimming etc., and I went through a stage of dreaming about running a while ago... Not running to or from anywhere... But just running... I really enjoy those dreams. :sleep:

I just long to be able to do normal things, including practical things that made me independent, like collecting and cutting up firewood, DIY, making things from builders' waste wood, etc. (Yes - I'm not a girly woman :lol:) I hate that loss of capacity. I still try to do some but have realised increasingly how little I can actually get away with before it will give me PEM.

For years I tried to carry on as before and didn't understand why I didn't get fit and just kept collapsing on the floor, having to go upstairs on my hands and knees, and getting horribly ill.

How many of us actually started resting and pacing straight away, and how many of us tried to carry on working, etc., before the horrible truth dawned on us?

But if we tell people this, it doesn't seem to register with them.
 

Revel

Senior Member
Messages
641
@MeSci, I would have started resting and pacing straight away, had I been promptly diagnosed and told to do so as part of the treatment protocol.

As it was, it took the NHS 40 years to even acknowledge that I was ill, during which time I had to continue working when my health permitted. Even since diagnosis, no advice has been forthcoming. The damage is done.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
@MeSci, I would have started resting and pacing straight away, had I been promptly diagnosed and told to do so as part of the treatment protocol.

As it was, it took the NHS 40 years to even acknowledge that I was ill, during which time I had to continue working when my health permitted. Even since diagnosis, no advice has been forthcoming. The damage is done.

40 years!!! :eek:

I only got a diagnosis ('CFS') after 4 years because I demanded it. I demanded it after seeing a video which came with my Open University course, that showed a woman with ME going upstairs on her hands and knees. It made me cry with recognition.

I had had suspicions about having ME, but was really almost-completely in the dark about what it was and what it implied. All I knew was that my muscles weren't working properly.

I got the diagnosis and naively expected some kind of treatment, and asked about referrals. Referrals were refused, and no treatment was offered.

When I put on a lot of weight a year or so later and asked the doc for advice he said "Diet........?...exercise.....?"

That was it.

I have had to work everything out over time, with help from places like this, but MUCH too late.
 

Revel

Senior Member
Messages
641
@MeSci, to be fair, the NHS weren't short on diagnosing my "issues" during that time. Apparently, I had hypochondria (mainly 'attention-seeking disorder'), chronic depression, anxiety, anorexia (turned out to be gastroparesis), etc, etc . . .

Got close to a proper diagnosis 20 years in, when my GP suggested PVFS. But when he left the practice, the replacement GP decided it was a mis-diagnosis and offered me more anti-depressants :bang-head:.
 

Aurator

Senior Member
Messages
625
Has anyone actually got their hands on a paper copy of any of the newspapers that have run this story? I have acquired a copy of the Daily Telegraph and I can tell you that the wording of the printed version is noticeably less mealy mouthed than the online version.

The online version's headline runs:
"ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers."

The printed version runs:
"Gentle exercise is best tonic for "yuppie flu"."

The opening sentence of the online version reads:
"Fear of exercise exacerbates ME and sufferers need to try and get up out of bed if they want to get better, a major study by King's College has found."

The opening sentence of the printed version reads:
"Sufferers of ME should get out of bed and exercise if they want to alleviate the condition, a study has found."

There are other differences in the body of the text.

The widespread press coverage of these "research" findings has clearly been carefully choreographed by the "researchers" responsible. I hope and trust that the main ME charities are making formal complaints in the right quarters over the damaging (not to say malicious) misinformation the story disseminates.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
"yuppie flu" and "get out bed and exercise".

Sigh, when will the media ever care about whether they are harming people or not?

Seriously I wonder what Fiona Fox at the SMC thinks about the Daily Mail running with "Yuppie flu" as a headline as a result of their media release?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
"yuppie flu" and "get out bed and exercise".

Sigh, when will the media ever care about whether they are harming people or not?

Seriously I wonder what Fiona Fox at the SMC thinks about the Daily Mail running with "Yuppie flu" as a headline as a result of their media release?

I imagine she is happy that her propaganda is so efficient

"Another is Fiona Fox, the sister of Claire Fox, who runs the Institute of Ideas. Fiona Fox was a frequent contributor to LM. One of her articles generated outrage among human rights campaigners by denying that there had been a genocide in Rwanda.(31)

Fox has used the Science Media Centre to promote the views of industry and to launch fierce attacks against those who question them."

LM BTW is Living Marxism and I have met some of them in other battles.

"In 1988, it set up a magazine called Living Marxism, later LM. By this time, the organisation, led by the academic Frank Furedi, the journalist Mick Hume and the teacher Claire Fox, had moved overtly to the far right. LM described its mission as promoting a “confident individualism” without social constraint.(7) It campaigned against gun control,(8) against banning tobacco advertising (9) and child pornography,(10)and in favour of global warming,(11) human cloning and freedom for corporations. It defended the Tory MP Neil Hamilton (12) and the Bosnian Serb ethnic cleansers."

http://www.monbiot.com/2003/12/09/invasion-of-the-entryists/
 

eafw

Senior Member
Messages
936
Location
UK
It might be worth looking at the Independent Press Standards Organisation (previously the press complaints commission)l

I think IPSO are as toothless as the PCC were, and it's a long drawn out process anyway. That's why I was looking for something more immediate to take directly to the newspapers and journalists.

There is a NUJ code of conduct that they seem to have breached here, just out of sheer laziness if nothing else
  1. Strives to ensure that information disseminated is honestly conveyed, accurate and fair.

  2. Does her/his utmost to correct harmful inaccuracies.

  3. Differentiates between fact and opinion.
9. Produces no material likely to lead to hatred or discrimination on the grounds of a person’s ... disability ...

https://www.nuj.org.uk/about/nuj-code/

Interestingly the guidelines they have in reference to various other "minority" groups are all largely informed by those groups and their advocates (rather than problematic institutional forces). They have a very clear statement on race reporting for instance.

Why the exception for ME, where any old sh1te churned out by said forces is taken to be the ultimate authority ?
 

eafw

Senior Member
Messages
936
Location
UK
At least there are some decent comments on the Guardian and Independent. Good example:

I've just been reading twitter and the ME twitterers are abuzz with this latest travesty. Also discovered the author of the above comment as she posted it in her timeline, Nasim Marie Jafry, who is an author and has written a book on ME. Has anyone read it, I'd not heard of her before ?
 

Min

Guest
Messages
1,387
Location
UK
Is the claimed recovery rate higher or lower than a placebo effect would have been , does anyone know please?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Far right "Marxists"? :rofl::rofl::rofl:
Thanks. This makes my day.

Bizarrely this does seem to happen. It seems that the political spectrum is circular. You go so far in one direction that you end up at the opposite extreme!

I mean - communist dictatorship is surely an oxymoron...

Maybe it's:

"Control should be in the hands of those who agree with me", and the further you go in that direction the fewer people agree with you, so you can end up as a minority of one!
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Many of the 'New Labour' right-wingers started out in the Communist Party of Great Britain. They kept the authoritarian leanings and just got rid of the 'being nice to poor people' stuff.

In the US if you scratch a "liberal" you will certainly find an authoritarian underneath...
 
Messages
1,446
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The founders and directors of the Science Media Centre, Sense about Science and the Institute of ideas were members of the Revolutionary Communist Party (Trotskyist), a much smaller and shorter lived org than the Communist Party of Great Britian.
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@jimells wrote: "Far right "Marxists"?


This article in the Guardian by George Monbiot describes the phenomenon of far left orgs turning far right. This article concentrates on the UK org Sense about Science, which has links with and similar origins to the Science Media Centre. The directors and original staff of both orgs are part of what’s loosely referred to as 'the LM network' (LM=Living Marxism). Entryism is the new work for infiltration.

Its not just us who are deeply concerned about the Science Media Centre (which has publicly stated that it orchestrated the 2011/12 media blitz of articles about so called 'Militant ME extremists').



http://www.theguardian.com/education/2003/dec/09/highereducation.uk2

‘Invasion of the entryists’
George Monbiot
Tuesday 9 December 2003

‘How did a cultish political network become the public face of the scientific establishment?’


‘One of strangest aspects of modern politics is the dominance of former left-wingers who have swung to the right. The "neo-cons" pretty well run the White House and the Pentagon, the Labour party and key departments of the British government. But there is a group which has travelled even further, from the most distant fringes of the left to the extremities of the pro-corporate libertarian right. While its politics have swung around 180 degrees, its tactics - entering organisations and taking them over - appear unchanged. Research published for the first time today suggests that the members of this group have colonised a crucial section of the British establishment.


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. It moved into the gay rights group Outrage and sought to shut it down. It tried to disrupt the miners' strike, undermined the Anti-Nazi League and nearly destroyed the radical Polytechnic of North London. On at least two occasions RCP activists physically attacked members of opposing factions.

In 1988, it set up a magazine called Living Marxism, later LM. By this time, the organisation, led by the academic Frank Furedi, the journalist Mick Hume and the teacher Claire Fox, had moved overtly to the far right. LM described its mission as promoting a "confident individualism" without social constraint. It campaigned against gun control, against banning tobacco advertising and child pornography, and in favour of global warming, human cloning and freedom for corporations. It defended the Tory MP Neil Hamilton and the Bosnian Serb ethnic cleansers. It provided a platform for writers from the corporate thinktanks the Institute for Economic Affairs and the Center for the Defense of Free Enterprise. Frank Furedi started writing for the Centre for Policy Studies (founded by Keith Joseph and Margaret Thatcher) and contacting the supermarket chains, offering, for £7,500, to educate their customers "about complex scientific issues".

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. In 2000, LM magazine was sued by ITN, after falsely claiming that the news organisation's journalists had fabricated evidence of Serb atrocities against Bosnian Muslims. LM closed, and was resurrected as the web magazine Spiked and the thinktank the Institute of Ideas.

All this is already in the public domain. But now, thanks to the work of the researcher and activist Jonathan Matthews (published today on his database www.gmwatch.org), what seems to be a new front in this group's campaign for individuation has come to light. Its participants have taken on key roles in the formal infrastructure of public communication used by the science and medical establishment.


Let us begin with the Association for Sense About Science (SAS), the lobby group chaired by the Liberal Democrat peer Lord Taverne, and whose board contains such prominent scientists as Professor Sir Brian Heap, Professor Dame Bridget Ogilvie and Sir John Maddox. In October it organised a letter to the Times by 114 scientists, complaining that the government had failed to make the case for genetic engineering. In response, Tony Blair told the Commons that he had not ruled out the commercialisation of GM crops in Britain. The phone number for Sense About Science is shared by the "publishing house" Global Futures. One of its two trustees is Phil Mullan, a former RCP activist and LM contributor who is listed as the registrant of Spiked magazine's website. The only publication on the Global Futures site is a paper by Frank Furedi, the godfather of the cult.

The assistant director of Sense About Science, Ellen Raphael, is the contact person for Global Futures. The director of SAS, Tracey Brown, has written for both LM and Spiked and has published a book with the Institute of Ideas: all of them RCP spin-offs. Both Brown and Raphael studied under Frank Furedi at the University of Kent, before working for the PR firm Regester Larkin, which defends companies such as the biotech giants Aventis CropScience, Bayer and Pfizer against consumer and environmental campaigners. Brown's address is shared by Adam Burgess, also a contributor to LM. LM's health writer, Dr Michael Fitzpatrick, is a trustee of both Global Futures and Sense About Science.


SAS has set up a working party on peer review, which is chaired and hosted by the Royal Society. One of its members is Tony Gilland, who is science and society director at the Institute of Ideas, a contributor to both LM and Spiked and the joint author of the proposal Frank Furedi made to the supermarkets. Another is Fiona Fox, the sister of Claire Fox, who runs the Institute of Ideas. Fiona Fox was a frequent contributor to LM. One of her articles generated outrage among human rights campaigners by denying that there had been a genocide in Rwanda.

Fiona Fox is also the director of the Science Media Centre, the public relations body set up by Baroness Susan Greenfield of the Royal Institution. It is funded, among others, by the pharmaceutical companies Astra Zeneca, Dupont and Pfizer. Fox has used the Science Media Centre to promote the views of industry and to launch fierce attacks against those who question them. She ran the campaign, for example, to rubbish last year's BBC drama Fields of Gold.


The list goes on and on. The policy officer of the Genetic Interest Group, which represents the interests of people with genetic disorders, is now John Gillott, formerly science editor of LM and a regular contributor to Spiked. The director of the Progress Educational Trust, which campaigns for research on human embryos, is Juliet Tizzard, a contributor to LM, Spiked and the Institute of Ideas. Gillott and Tizzard also help to run Genepool, the online clinical genetics library.

The chief executive of the British Pregnancy Advisory Service is Ann Furedi, the wife of Frank Furedi and a regular contributor to LM and Spiked. Until last year she was communications director for the Human Fertilisation and Embryology Authority. The coordinator of the Pro-Choice Forum, which publicises abortion issues, is Ellie Lee, a regular writer for LM and Spiked and now series editor for the Institute of Ideas.


Is all this a coincidence? I don't think so. But it's not easy to understand why it is happening. Are we looking at a group which wants power for its own sake, or one following a political design, of which this is an intermediate step? What I can say is that the scientific establishment, always politically naive, appears unwittingly to have permitted its interests to be represented to the public by the members of a bizarre and cultish political network. Far from rebuilding public trust in science and medicine, this group's repugnant philosophy could finally destroy it.’

.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
.

Its not just us who are deeply concerned about the Science Media Centre (which has publicly stated that it orchestrated the 2011/12 media blitz of articles about so called 'Militant ME extremists').

Do you have a link for that - the ME extremist bit?
 
Messages
1,446
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@MeSci - There's a link somewhere (the SMC/extremist articles/orchestration bit) - bear with me until I find it. I am pretty sure its from a SMC official publication on the SMC site. .