The Times covers ME/CFS today with two items (Nov 2, 2016)

[daisybell]

The MEA has been assisting Janet Eastham with the first item:

http://www.meassociation.org.uk/201...ht-this-is-the-end-the-times-2-november-2016/

The second item, by science editor Tom Whipple, covers the FITNET trial:

http://www.thetimes.co.uk/edition/n...-fatigue-get-therapy-on-their-phone-0sn50bktx

Most of this article is behind a TIMES paywall……

Dr Charles Shepherd
Hon Medical Adviser, MEA

Thanks @charles shepherd - that first article is good! It's great to read something that actually has some balance and shows the awful reality of severe ME.... and that the NHS is unfit/unable to manage it.

 

[worldbackwards]

Thirty per cent of children who come to our clinic do develop depression or anxiety and I am always constantly surprised that it’s not more.

I am also astonished that more people who come into contact with Crawley don't develop depression or anxiety. You have to salute their fortitude.

 

[Esther12]

I have to admit that I was disappointed by both pieces. I think I remember Janet Eastham being a patient who gets it and is a goodie, and I'm sure it's a pain to get anything into the papers, but:

This week a group of researchers at Bristol University, led by Professor Esther Crawley, offered new hope for sufferers. Until now, it has often been overlooked that up to 1 in 50 children and teenagers have CFS and that it can disrupt education.

The 1 in 50 figure seems pretty questionable - maybe it was overlooked because it was BS?

Crawley’s online treatment programme sounds promising but some of those who are affected by the illness are likely to be suspicious of a treatment that involves psychological therapy, the validity of which for treating CFS has been a subject of heated debate.

Maybe patients are suspicious because the trial appears poorly designed and Crawley has form with spinning results for CBT/GET trials? Why play along with the notion that patients are concerned because the trial involves a 'psychological' treatment?

That's not my concern, and if that's all that concerns other patients then they sound pretty foolish to me.

Also, I'm not really keen on anecdote based stories, and this one with Emma Franklin [best wishes to her, and she's braver than I to put her story in the paper - I know I've done and said lots of things I regret to do with my health] seems particularly risky as it sounds like she's pursuing some alternative treatments that have no better evidence to support them than CBT/GET.

Maybe, my expectations were unduly raised for this, but it felt like it could be a net loss (sorry to be negative). Crawley does sound a bit rubbish, but so do patients concerned about the trial, and again it feeds into this misleading narrative that the key conflict is over psychological vs non-psychological treatments/models of illness. That presentation of the issue makes things so difficult for us. It should be about 'is this rigorous research'? 'Are misleading claims about made about treatment efficacy?' Those are the issues that really matter, and they're debates where the evidence is really on our side.

We really need to do all we can to get away from this phony 'psychological vs biological' debate that gets in the way of picking apart the flawed research which is being used to make misleading claims to patients. For the sake of the arguments around PACE/FITNET/etc it really doesn't matter whether or not CFS is a psychological illness... lets get down to discussing the merits of these researchers work!

I worry that social media/twitter is a bit unhelpful here, as the important issues are complicated and don't fit into a tweet, but 'psych treatments' for CFS is a shorthand for so many problems to those who already know the history. I worry that patients mutual understanding of one another encourages some communication to take place in a way that serves to undermine us with outsiders.

 

[Valentijn]

Every time I think things are finally changing there's a new media blitz of the same old CBT/GET/harassment nonsense and we're back to square one. This is so demoralising.

I think we need to have a paper published about the manner in which ME patients have been systematically repressed and defamed by so-called researchers. The SMC has played a big part in this, and has largely gotten away with it because the british public and even the british media doesn't understand that an organization (with "science" in the name, no less) partially funded by government agencies, is also funded and corrupted by private interests. We need to both call out these abusive practices, and take down the SMC.

They are saying it's biological but wait, they can still cure it with quackery.
Wow.
I think preferred it when they said it was psychosocial.

It's a good switch. Claiming to cure biological diseases with a bit of online counseling won't make sense to most readers, and makes them sound like a bunch of ridiculous quacks. They take this approach because they're assuming people will read between the lines to reach the conclusion that it's actually a psychological condition (wink wink), but the only ones who will do that are the other quacks.

Personally, I think we are unlikely to see most established researchers sticking their heads above the parapet in the UK. When the establishment clearly supports Crawley and her friends, most researchers who rely on the establishment for their funding, to pay their mortgage, put food on the table, etc etc, are going to be very reluctant to go against that.

The other problem is that the UK has some truly draconian defamation laws. Anyone suggesting that someone is unfit for their job, lying, harming patients, etc, can be taken to court and sued. Then the person making the claims of misconduct has to prove that they're true. So basically, no one with anything to lose will speak out strongly until the case against the fraudsters has already been proven for them.

 

[trishrhymes]

I agree defamation laws (rightly) stop us defaming people. What we need to 'defame' is their so called science by proving it wrong.

Or rather by demonstrating that they themselves have proved their biopsychosocial model wrong by running endless trials with null outcomes. It is their continual denial of the null outcomes by either burying them through lack of publicity (FINE trial), not publishing them at all, or by outcome switching (PACE) that we need to find a way to counteract.

And we need to find a way to cut through to the media and government with the good science that is happening.

 

[Valentijn]

I agree defamation laws (rightly) stop us defaming people. What we need to 'defame' is their so called science by proving it wrong.

Calling the research dishonest or fraudulent obviously implicates the researchers as dishonest or engaging in fraud. The research doesn't conduct or write itself. This is why comments on media articles are deleted in a seemingly arbitrary manner - they're removing the comments which cross a very narrow line between saying the research is wrong versus the research suffered from misconduct.

 

[Molly98]

I have just watched the Dr Bateman Global Progress Report giving an overview of recent developments and scientific research from the two conferences in Sweden and the US-

It is fantastic well worth watching, made me feel very positive and hopeful after 2 days of feeling very frustrated and quite despairing at British media and medical situation.

I think this video is an excellent way of us letting the science do the talking.

I am wondering whether the strategy of each of us consistently commenting on articles, in the Newspapers on social media, with one small sentence and a link to this video may be far better than trying to enter into debate or trying to argue our point, which is seen as just an opinion.

Perhaps a short sentence just pointing out how far behind and backwards this BPS CBT approach is compared to rest of the world and then the link.

Or if people want evidence go to link...

What they fail to tell you - go to link...

or what a waste of tax payers money...

or how deceptive and misleading and public and patients being mislead..

I am going to repost in a couple of other threads just to spread the link and idea more widely. So sorry if you see this repeated.

This is what we need the public and media to see the evidence themselves, it speaks for itself no exhausting arguments needed. Us just keeping it short, consistent and concise, people just need the correct information and we repeat and repeat and repeat ( that's what they do in marketing isn't it!)

 

[BurnA]

The MEA has been assisting Janet Eastham with the first item:

http://www.meassociation.org.uk/201...ht-this-is-the-end-the-times-2-november-2016/

The second item, by science editor Tom Whipple, covers the FITNET trial:

http://www.thetimes.co.uk/edition/n...-fatigue-get-therapy-on-their-phone-0sn50bktx

Most of this article is behind a TIMES paywall……

Dr Charles Shepherd
Hon Medical Adviser, MEA

Charles - will, the MEA be issuing any statement on Fitnet?

 

[worldbackwards]

Charles - will, the MEA be issuing any statement on Fitnet?

Bit late now, no?

 

[BurnA]

Bit late now, no?

It's never too late to leave the CMRC !

 

[Snowdrop]

I know that they are able bodied and healthy but don't they ever tire of the game playing and skullduggery?

 

[Ysabelle-S]

To me, everything they're doing - and they're being very heavy-handed about it - is down to the fact they are losing ground to the science. Which is why it doesn't get me down (and my immediate family know better than to believe this psychobabble rubbish), but I am concerned for the children and anyone else who falls in to their hands. There are some decent researchers in the UK, but overall I expect nothing from here and intend to continue tweeting international research - my largely non-ME followers have been getting a good education on the subject. I'm surprised they haven't unfollowed me out of boredom at times, but some of them have been very supportive. I've almost never had a follower suggest it's anything other than a serious biomedical condition. So I'm going to keep chipping away, plugging the really good researchers and institutions and tweeting papers and conference stuff.