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Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

Messages
2,158
Bbc are really running with this one. On the radio Today program they've just had Tymes trust, a patient and Crawley. Tymes was good but so brief I've already forgotten what she said. Patient was articulate and clear - the treatment she described sounded more like pacing than GETand she's not fully recovered. Crawley was able to sound plausible and managed to throw in a bit about opposition from a tiny minority that is unpleasant for her. Poor thing she's such a hero:devil:.
They really have the media sewn up. What a nightmare.
It's clear she's still using Oxford criteria, modified down to 3 months fatigue for children.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
this has u[set me enormously after the IACFS and the feeling that we are finally getting somewhere.

1 in 50 children has ME??? what criteria are they using. then they rnt on about how many kids miss school days because they are 'tired'!!?

My daughter lost the last 6 months of her schooling to a mystery illness - bedbound and severely ill, we had no help at all and she certainly had always had good food, good sleep patterns etc etc. She tested highly positive for lyme eventually.

As a patient and a mother this makes me sick to read....and leaves me with no hope that the UK can do any decent research into this illness. When is the UK Rituximab trial starting?
 

mermaid

Senior Member
Messages
714
Location
UK
Already posted on another thread. Seems they've altered the title. It did say "
Landmark chronic fatigue trial could cure two-thirds"

I would do a screenshot of the original if I knew how to. One headline was at 7 a.m. and the other at 8 a.m. So why did they change it? Can't have been the patients I feel sure - - was 'cure' judged by someone to be a step too far?

Landmark chronic fatigue trial could cure two-thirds
By James Gallagher Health and science reporter, BBC News website

Landmark chronic fatigue trial could treat two-thirds
By James Gallagher Health and science reporter, BBC News website
 

soti

Senior Member
Messages
109
Usually editors write the headlines. Probably the writer told the editor that "cure" wasn't appropriate.
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
It just feels hopeless here in the UK when the BBC headline makes the treatment of CFS seem so straightforward, just follow an on-line course and you will be cured or at least 2/3rd will be. Absolutely horrendous misinformation and no real opposition to the statements made.

I realise they are talking about school children which perhaps makes it even worse but its obvious that from the way they are talking it could be just as successful in any sufferer.

Truly shocking to somebody who has true ME/CFS.

Pam
 

Keith Geraghty

Senior Member
Messages
491
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snowathlete

Senior Member
Messages
5,374
Location
UK
Lest anyone think there is any hope for MEGA or the CMRC....here is a doozy comment from Prof Holgate from the BBC link talking about the FITNET project

"Prof Stephen Holgate, from the Medical Research Council, said: "CFS/ME is an important disabling condition.

"It has been chronically underfunded for years, patients deserve high quality research like this."

So this is what he considers high quality research? Lordy lord.

Get signing OMEGA. Quick!

https://www.change.org/p/opposing-m...twitter&utm_campaign=share_twitter_responsive

Yep, this is what Holgate considers to be high quality research. He thinks we deserve no better. Why would anyone want to support him leading another research effort?
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
They really have the media sewn up.

I hate saying it, but I've completely given up on the UK. I don't have the energy to fight this propaganda machine and all the vested interests that have cornered the market around the illness here.

And following coverage of the illness in the British media is like some Kafkaesque nightmare where you get constantly informed by 'official' sources that up is down, truth is not truth, and the easter f***ing bunny is running the country. I happened on the Guardian's Crawley advertisement and came here just to check that I hadn't totally lost my friggin' mind. :bang-head::ill::whistle:

Sorry for the council of despair, but I don't see the answer to the UK's ME nightmare lying within the UK at all. The UK's past saving on this one. Salvation will have to come from elsewhere.
 

ash0787

Senior Member
Messages
308
Heres my complaining

Category - Factual inaccuracy

Title - Publicising fraudulent research

[ " A therapy that successfully treats two-thirds of children with chronic fatigue syndrome is being trialled for NHS use. "
The medical trial mentioned in this BBC news article is based on cognitive behavioural therapy and graded exercise therapy, the NHS guideline treatments for the disease CFS/ME,
however these treatment methods are based on a previous research trial in the UK called PACE which has recently been proven to be fraudulent research with manipulated data following a FOI request for the individual patient results of the trial.

The BBC should have been aware of the controversy surrounding this subject before publishing this article and portraying the therapy in a positive light, when the actual statistics and patient experiences indicate that the therapy has a high risk of making the disease significantly worse.
In other words the BBC is promoting something which is known to be likely to result in severely disabled children but instead is touting it as a potential 'breakthrough treatment',
despite the fact that this exact approach has already been used by the NHS for years with ineffective results.

Its also indicative of bias, corruption or just poor quality journalism that the BBC decides to
cover this story rather than legitimate research conducted by respected scientists at the IACFS/ME conference in florida last week. ]


I will probably also mention this to some political activist friends of mine
 

eafw

Senior Member
Messages
936
Location
UK
From the SMC statement:

"Unfortunately controversy rages around the illness and the treatment ...

... rising tension from some people who do not support treatments such as CBT or Graded Exercise Therapy

... Why is there such hostility around trials in children from some patient groups?

... What barriers are being put in the way of trials like this from going ahead?

... What do children with CFS/ME want and why is their voice not being heard?"


This is a continuation of the spin and slander that has been going on for years now - and it is still being swallowed whole without question by the majority of the UK press.

These statements about "controversy", "hostility", "rising tensions" and "trials like this" are intended to pre-empt and dismiss legitimate criticism that patients (and our advocates) are putting forward.

The ~won't somebody think of the children~ speel is again to paint legitimate opposition as instantly in the wrong.

We really need a strong response to all this.
 

Countrygirl

Senior Member
Messages
5,431
Location
UK
Well, I didn't know what to think about Holgate.
Now I have very few doubts. His support to EC's work is very clear.
And there are too much worrying things in this whole CMRC project.

As for his will to collaborate with patients, is this how he intends to proceed? Using the SMC mass propaganda machine, who actively participated in the campaign to dismis patients' voices and concerns as vitriolic extremist claims?

God, I really don't understand this situation, this is utter madness.
How can this be taking place at the same exact moment when the Swedish and US conferences just happened?

He certainly seems to be in Crawley's pocket.

Can we really expect Prof Holgate to listen to and respect our concerns? I think the answer is in @Cheshire's post.

Back to the letter.....................
 
Messages
85
I don't know if this is on here or not but the BBC have changed the title again

'Landmark'.png


'Landmark'

Edit -
I think I should have linked this to ZeroGravitas post above. Can't work out how to do it now.
 
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JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
From the SMC statement:

"Unfortunately controversy rages around the illness and the treatment ...

... rising tension from some people who do not support treatments such as CBT or Graded Exercise Therapy

... Why is there such hostility around trials in children from some patient groups?

... What barriers are being put in the way of trials like this from going ahead?

... What do children with CFS/ME want and why is their voice not being heard?"


This is a continuation of the spin and slander that has been going on for years now - and it is still being swallowed whole without question by the majority of the UK press.

These statements about "controversy", "hostility", "rising tensions" and "trials like this" are intended to pre-empt and dismiss legitimate criticism that patients (and our advocates) are putting forward.

The ~won't somebody think of the children~ speel is again to paint legitimate opposition as instantly in the wrong.

We really need a strong response to all this.

So long as some of the UK leading charities are colluding with these people, there won't be a strong response. As usual we can most likely expect a response from IiME, Tymes Trust and the 25% group but the others are bought into MEGA with EC, Holgate et al leading them by the nose.