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

[eafw]

Do you have a link for that - the ME extremist bit?

there's this

http://www.theguardian.com/society/...ic-encephalomyelitis?cat=society&type=article

 

[Roy S]

.

@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. .

Is this what you are thinking of?
http://forums.phoenixrising.me/inde...cle-in-sunday-times.23050/page-10#post-360792

 

[Wildcat]

.
"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." .

Yes, Its pretty explicit in the SMC publication 'Review of the first three years of the mental health research function at the Science Media Centre' . February 2013. Page 10:

'Supporting experts targeted by extremists'

http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

.

 

[mango]

... 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 ?

'the state of me'. yes, i've read it. it's fiction, really well written and i enjoyed it a lot. i would definitely recommend it to others -- both pwme and others.

 

[Sean]

'powerful ME lobby'

This persistent bit of propaganda is one of the most demonstrably dishonest of all the claims made about us.

Just look at who gets the money, the uncritical and even fawning media coverage, rules the academic roost, and sits on the advisory boards to governments and corporations.

Hint: It ain't ME patients.

 

[biophile]

'powerful ME lobby'

LOL, not only "powerful", but "dangerous", and "damaging" to research.

(from the other thread someone linked to above)

"Harassment is most damaging in the form of vexatious FOIs."

- UK CFS/ME Research Collaborative (UK CMRC) [email of meeting minutes] 1st February 2013

In attendance: Peter White, Joe McNamara, Carmel Turner, Esther Crawley, Simon Wessely, & Trudie Chalder.

http://bit.ly/1vSRhOI

I just had a quick look at the definition of vexatious requests and basically they can be ignored with minimal response. Do we know how many vexatious requests have been submitted, or even that any were fairly categorized as such?

 

[taniaaust1]

Can someone tell me if I imagined my collapse onto the floor after 5mins at a gym doing a dance class... I swear I was on the floor, shaking and dizzy and wasnt able to stand up but I guess I must of imagined this and also imagined I also tried to stand up but went down again.

I guess I must of imagined I cant do the whole dance class thing.

 

[Countrygirl]

Is the Guardian attempting to say 'sorry' with this piece today??

http://www.theguardian.com/commenti...plistic-news-reports-chronic-fatigue-syndrome

My heart sank when I went online this week. I saw that some new research about chronic fatigue syndrome (CFS) had been released, with one headline saying that “fear of exercise exacerbates CFS”. Researchers claim that a fear of exercise worsens the disorder – which is also known as ME – and sufferers need to try and get out of bed if they want to get better.

I just wanted to cry. It has taken me 18 months of fighting to get people to believe that what I am suffering is real and not simply made up, or laziness. Some still don’t. I’ve been told that I need to get a grip, make an effort, stop being lazy, that it’s all in my head. I have even been told that “it would be better for people if you were dead”. CFS is still a mystery to the medical world. It’s never really spoken of, and so people don’t understand what it’s like to have your life changed so dramatically.

Eighteen months ago I was “normal”. I worked 40+ hours a week, volunteered in my spare time for a bereavement charity, went to watch football, socialised, and was always on the go. Almost overnight that all changed. I can no longer work. In fact, I am rarely able to leave the house, and spend up to 23 hours a day in bed. I have seen the world I know and love crumble around me; my family have become my carers; my relationship has suffered; and I have lost my connection to friends and the outside world, becoming a recluse.

 

[Valentijn]

A pretty weak and unbalanced response, if that's what they intended it to be. There should be a scientific and logical rebuttal of the claims which were presented, not "Yeah, I feel sick, and the article upset me."

 

[Countrygirl]

http://www.nhs.uk/news/2015/01January/Pages/Therapy-and-exercise-may-help-some-with-CFS.aspx

Now NHS Choices are gently rapping the knuckles of the newspapers......................while supporting the researchers of course.

 

[Cheshire]

A pretty weak and unbalanced response, if that's what they intended it to be. There should be a scientific and logical rebuttal of the claims which were presented, not "Yeah, I feel sick, and the article upset me."

And the comments are not better...
Most state that the study they gave a quick look into is interresting but has been misrepresented by the media, that CBT is so helpfull, that we are not lazy and that mental illness should be given more compassion...

Arrgggg, we are not trying to escape the mental health stigma, we want real cure!

 

[Esther12]

A pretty weak and unbalanced response, if that's what they intended it to be. There should be a scientific and logical rebuttal of the claims which were presented, not "Yeah, I feel sick, and the article upset me."

As an individual's response, that's fine and I don't want to seem critical of them, but as a response to the spin and media coverage, I don't think it's a good tactic.

 

[chipmunk1]

As an individual's response, that's fine and I don't want to seem critical of them, but as a response to the spin and media coverage, I don't think it's a good tactic.

Am I fearful of exercising? Yes, if I am honest. But it’s not that I am afraid of doing the exercises: I WANT to be able to walk and to go shopping. But I also know the physical suffering I feel after pushing myself too hard. It’s hard not to be afraid of feeling so ill that you can’t raise your head off the pillow for days on end.

the sharks smell blood.

 

[Bob]

Is the Guardian attempting to say 'sorry' with this piece today??

http://www.theguardian.com/commenti...plistic-news-reports-chronic-fatigue-syndrome

As an individual's response, that's fine and I don't want to seem critical of them, but as a response to the spin and media coverage, I don't think it's a good tactic.

Yes, it doesn't substantially address the issues, but I think any normal person reading that would understand and relate to it, so I think it's a helpful letter generally speaking.
Psychiatrists would pick it apart and have a field-day, but anything we say or do is misinterpreted by them anyway.

 

[jimells]

Am I fearful of exercising? Yes, if I am honest.

the sharks smell blood.

Her closing statement is really bad. *I* am not fearful of exercising. But I sure don't look forward to the aftermath...

 

[Antares in NYC]

Can someone tell me if I imagined my collapse onto the floor after 5mins at a gym doing a dance class... I swear I was on the floor, shaking and dizzy and wasnt able to stand up but I guess I must of imagined this and also imagined I also tried to stand up but went down again.

I guess I must of imagined I cant do the whole dance class thing.

No Tania, you didn't imagine it. It was just that you were afraid of dancing. There, fixed.

 

[Antares in NYC]

'powerful ME lobby'

This persistent bit of propaganda is one of the most demonstrably dishonest of all the claims made about us.

Just look at who gets the money, the uncritical and even fawning media coverage, rules the academic roost, and sits on the advisory boards to governments and corporations.

Hint: It ain't ME patients.

Someone please tell me the "secret handshake" so I can join the "powerful ME lobby" and start rolling on the sweet, sweet ME/CFS dough!!!

Now seriously, that "powerful ME lobby" canard is not just offensive, false, and painfully unfair. It's the type of propaganda mantra that would make Goebbels proud. For real! Nobody gives two s#!ts about this illness, we have been maligned and shamed for our suffering, and any research has to be funded by the impoverished and disabled patients and their families.

Some lobby!


(Sorry for the rant)

 

[MeSci]

No Tania, you didn't imagine it. It was just that you were afraid of dancing. There, fixed.

Yep - just as I am afraid of going for nice country walks, and even of going up the stairs sometimes.

I need CBT!

 

[biophile]

In addition to the nonsense that one of the most disempowered patient populations supposedly has a "powerful lobby", is the description of them being "highly organized". Granted that patients communicate online, but everything patients do simply pales in comparison to the organization required to secure funding, run multi-million pound clinical trials, flood the literature with publications, get sympathetic associates to write editorials, form networks and multiple work groups, get the Science Media Center to "engineer" a series of news articles and set the "agenda" of media coverage in their favour, etc.

Those promoting CBT/GET are the ones with the highly organized and (relatively) powerful lobbying, although I tend to see them as medium sized fish in a very small pond full of sick tadpoles. Their mediocre influence only towers in comparison to a severely disempowered and fragmented patient population starved of biomedical funding. How do you think they would stand up compared to the climate-change counter movement who collectively receive $900 million annually to spread FUD?

http://www.theguardian.com/environment/2013/dec/20/conservative-groups-1bn-against-climate-change

IIRC, one of the journals which has published a PACE paper (I don't recall which) tried to claim that there was evidence of organization and collaboration because letters making very similar points kept arriving. Rather than seeing this as evidence that some of the letters may be based on public knowledge or that the problems with the trial are so blatantly obvious that lots of people from all walks of life came to the same conclusion, they chose to frame it as an extremist patient conspiracy aiming to unfairly discredit the trial. If those submitting letters were so organized, why would they keep sending in redundant letters on the same issues? There's only so many letters that can be published in print.

 

[Min]

As an individual's response, that's fine and I don't want to seem critical of them, but as a response to the spin and media coverage, I don't think it's a good tactic.

The response was only online, not in the printed paper.