Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

[lilpink]

I am too ill, but if you are willing to stand behind what you said here my parents will report this to Reporters Without Borders and groups that track human rights violations.

I'd be very interested in seeing this taken forward...

 

[Jonathan Edwards]

This makes UK sound like a dictatorial regime. Why is UK then ranked a high 40th place (out of 179) in 2017 World Press Freedom Index (a number that was brought down because of Espionage Act that could jail journalists for being spies - not pertinent in our situation).

Why are we not reporting this to Reporters Without Borders? Why did we not stand behind those fired journalists and made sure everyone knows what happened?

40th does not sound that good. It just means people do not get sent to prison for what they say. You can say what you like here. It is not the state that makes the phone call. It is a member of a club that for some reason people respect. You get much the same in the US. I was nearly rubbed out professionally by US physicians who were threatened by my science. (Luckily a senior member of the UK club put in a word for me.) It just takes a different form. Reporting the situation to Reporters without borders is a bit like reporting Donald Trump to the Republican Party. The reporters would get fired by other reporters remember. And Rupert Murdoch runs the government so nobody is going to care a toss.

Life is like this all over the world. Each community has a different sort of thought police. And people like it like that.

 

[Marco]

40th does not sound that good. It just means people do not get sent to prison for what they say. You can say what you like here. It is not the state that makes the phone call. It is a member of a club that for some reason people respect. You get much the same in the US. I was nearly rubbed out professionally by US physicians who were threatened by my science. (Luckily a senior member of the UK club put in a word for me.) It just takes a different form. Reporting the situation to Reporters without borders is a bit like reporting Donald Trump to the Republican Party. The reporters would get fired by other reporters remember. And Rupert Murdoch runs the government so nobody is going to care a toss.

Life is like this all over the world. Each community has a different sort of thought police. And people like it like that.

Oh dear Jonathan. You really are looking in the wrong direction for those who shut down debate.

 

[Jonathan Edwards]

Oh dear Jonathan. You really are looking in the wrong direction for those who shut down debate.

I don't get your meaning Marco. Maybe I'm dim.

 

[Tally]

40th does not sound that good. It just means people do not get sent to prison for what they say. You can say what you like here.

Well, it is. I explained why it's not higher. My country is around 80th spot and we have free press and never jailed journalists either.

Reporting the situation to Reporters without borders is a bit like reporting Donald Trump to the Republican Party. The reporters would get fired by other reporters remember. And Rupert Murdoch runs the government so nobody is going to care a toss.

It is nothing of the sorts. Reporters Without Borders are international, non-governmental organization that has headquarters in France.

Life is like this all over the world. Each community has a different sort of thought police. And people like it like that.

This sounds like a flimsy excuse. People fight to make things better all the time. My offer still stands.

 

[Jonathan Edwards]

It is nothing of the sorts. Reporters Without Borders are international, non-governmental organization that has headquarters in France.
.

I do not doubt that, but if a reporter gets fired because his reporter boss likes to keep in with the cosy club I fail to see how RWB are going to help. The firing reporter boss will easily find an excuse about copy not being very exciting recently. And very likely the reporter was not even on a permanent contract.

This is not an issue of press freedom - which is what RWB deals with I presume. If the editor in chief does not want to publish or employ a reporter that is his privilege. We do not want the press to be censored by others but if they censor themselves I am not sure that we can complain.

 

[Chrisb]

One thing that I have, over the years, noticed is the number of senior reporters and editors who were said to have been recruited at university (usually Cambridge) to work for the security services. At least Cambridge is an equal opportunities employer. Any security services will probably do.

EDIT I sometimes wonder about senior members of other professions, even medicine, and wonder whether careers might occasionally have had a nudge in a helpful direction.

 

[Jonathan Edwards]

One thing that I have, over the years, noticed is the number of senior reporters and editors who were said to have been recruited at university (usually Cambridge) to work for the security services. At least Cambridge is an equal opportunities employer. Any security services will probably do.

Yes, and the Russians have done fine as employers as well!

 

[Barry53]

I don't disagree, but in many cases, the science is less relevant than the sentiment.
This is IMO one of them.

Biomedical treatments (rituximab) is mentioned heavily. This is not going to lead any scientist picking up the paper to think 'oh no, this must be an exhaustive coverage of the literature, hence I won't bother'.

But, to possibly become interested in the condition, or perhaps reevaluate their opinion on it. More biomedical papers being listed aren't going to particularly help.

That, and it perhaps paves the way for the discussion in the media to move on to some of the biochemical complexity.

I agree with this wholeheartedly.

 

[Demepivo]

1800 shares...well done people Keep sharing!
Most articles in the Mail get under 100

Jerome Burne may be activated to write another similar article

https://twitter.com/i/web/status/897891556677439488

 

[Barry53]

This makes UK sound like a dictatorial regime.

The issue is really about control of information. Dictatorships have a fairly brutal and straightforward means of achieving this. Democracies such as the UK are prone to more subtle mechanisms managing how and what gets published: expertly managed propaganda campaigns; approved channels filtering news media; cultivation of relationships within information dissemination "clubs"; etc, etc. Powerful, influential, deeply manipulative (and very good at it) people highly effective at promoting their very distorted views. Science "stories" filtered via an organisation very probably set up for the primary purpose of filtering science stories, combined with lazy modern media organisations that prefer to be spoon fed stories, rather than investigate for themselves.

Might sound like paranoia, but paranoia is only paranoid if you feel threatened by something that isn't really threatening - but this this is real.

 

[alex3619]

lazy modern media organisations that prefer to be spoon fed stories

Churnalism is growing because it is cheap. The direction of that growth might be influenced, and probably is in most cases, but the fact of it is financial. They sack investigative reporters, put the cheaper journalists on most stories and then demand the story be written in half the time, with no investigative budget at all. Even so most media outlets are facing a doubtful financial future. So the cost slashing continues.

Editorial bias is a separate bias.

 

[arewenearlythereyet]

I wrote that post while munching quinoa.

Of course quinoa is doing terrible damage to the Peruvian economy. It's also got quite a lot of carbs in it when you look at a 75g portion.

M&S do a British version if you want to be more ethical

 

[Marco]

I don't get your meaning Marco. Maybe I'm dim.

I doubt Rupert Murdoch or the government (current and previously elected) are particularly interested in ME/CFS or PACE. Those promoting it and defending it are more likely to be found amongst those who've made a nice career for themselves in the real UK establishment - unaccountable public bodies, academia and various advisory bodies to government.

Who for example within the DWP signed off on funding PACE and why? - Policy based evidence making? Or why do Goldacre's Bad Science forum members seem to have a blind spot when it comes to PACE even when spoon fed the issues?

As for the SMC, clearly they are unhealthily close to some of the BPS crowd but they've also built PACE up as an example of a 'gold standard' methodology. To admit it is anything but not only undermines PACE but also claims that the methodology used guarantees quality. Rather inconvenient for those pushing 'evidence based' medicine.

 

[Jonathan Edwards]

I doubt Rupert Murdoch or the government (current and previously elected) are particularly interested in ME/CFS or PACE. Those promoting it and defending it are more likely to be found amongst those who've made a nice career for themselves in the real UK establishment - unaccountable public bodies, academia and various advisory bodies to government.

OK, I agree with all of that. I guess I was just making the point that the problem in the UK is not the press being stifled by government. The press choose to stifle themselves as part of the cosiness you mention and ultimately the press run the whole show anyway.

 

[slysaint]

Times LIVE (South Africa):

"A medical breakthrough has put a smile on the tired faces of those with chronic fatigue syndrome‚ often told to simply “get it together‚ exercise and get therapy”.

Sufferers of the condition have much higher levels of a range of cytokines in their blood‚ according to new research."

https://www.timeslive.co.za/sunday-...drome-is-not-just-in-the-mind-say-scientists/

not really worth bothering with but thought I'd post it anyway

 

[Ben H]

I don't really have much to say to be honest, a lot of the viewpoints I was nodding along with. I totally agree with what Janet @Janet Dafoe (Rose49) has said. Then I remember that we are in the UK and the libel laws here being as draconian as Valentjin mentions impeding so much-this article being one of them (I don't buy that the article would be exactly the same if our libel laws were different).

Ironically I was only recently having a chat with one of my best friends who is informed on this very issue.

So what Janet has said is exactly what needs to happen imo. This teetering around the edge that was very evident to my eyes from the article is extremely fustrating. This article being the best article that the DM has ever published on MECFS, which I paradoxically believe it is, speaks volumes about the absolute shit, medicocrity, bias and mouth gagging we are so used to, nigh conditioned to here.


B

 

[Cinders66]

This isn't about Ron. It's about the content that he told the reporter in his interview. Having just been in a pretty intense 3 days of the science of ME/CFS, it was shocking to me to see an article still reporting that there's a big debate about PACE. The debates at the science meetings were about autoantibodies and gene expression, et al!

It seems to me that maybe in the UK people are so used to being in a country where they are mostly denied medical care for their disease, told it's "false illness beliefs", advised by persons in authority to exercise, which makes them worse, and being spoken to with sarcasm, disdain, and patronization, that any small mention of the "debate" that includes a mention of science seems like a "balanced" article.

When talking about the planets, do we still write a "balanced" article that includes the possibility that the earth is flat?

What Ron told him, among other things, was that what is happening to patients in the UK and other countries that have bought into the PACE view, is barbaric, and that the medical and scientific communities there were contributing to massive suffering, and that the PACE Trials were bad science, could not support their conclusions, and should be retracted.

That any scientist reading them should be shocked that they were even published, and that they make perfect fodder for a class on finding mistakes in publications. That is the story that needs to be told.

I don't care if Ron's name is in there. I want them to tell the REAL story of what is happening there. It's horrendous. THAT is the story that needs to be told, not some "balanced" view that makes it seem possible that PACE provides any data for anything and that CBT and GET are an alternative to be debated.

The debate now is over data and mechanisms of the DISEASE! The suffering caused by this stupid debate and the extent of the science were not in that article. I think it's a shame.

And time for all scientists and medical people to get into the 21st century and pay attention to SCIENCE in an open minded way, and stop contributing to the suffering of millions of people.

In the UK patients I know can't even get a saline drip! Ridiculous!

Where is the article that screams "PACE DEBUNKED", or "Accumulation of myriads of scientific studies unraveling the medical mystery of ME/CFS", or "How can we end the suffering of millions?".

So no, I don't like the article. I'm not balanced. LOL

I know of just one person in uk who's managed to get a saline drip for IV saline treatment if that's what you mean, and even she had to battle despite having the top two Drs on board. Does Whitney have saline IV and does it help him? Thanks

 

[TiredSam]

Times LIVE (South Africa):

"A medical breakthrough has put a smile on the tired faces of those with chronic fatigue syndrome‚ often told to simply “get it together‚ exercise and get therapy”.

Sufferers of the condition have much higher levels of a range of cytokines in their blood‚ according to new research."

https://www.timeslive.co.za/sunday-...drome-is-not-just-in-the-mind-say-scientists/

not really worth bothering with but thought I'd post it anyway

Sorry is it just me, but I can't find the reference to "yuppie flu" in this article. I've looked twice but it seems to be missing. Someone should phone and remind them that it's mandatory for an M.E. article - although in their defence the picture showing us what a headache looks like does seem to contain three yuppies at a yuppie meeting.

 

[CFSTheBear]

I just thought I'd give my opinion on this for what it's worth, as a national newspaper journalist who has been on sick leave since he got severely sick.

- The Mail article is not the perfect article that we'd like to see on ME. It's not a tell-all of the PACE Trial. What it is, is a balanced story that clearly highlights and gives voice to those that are promoting research, treatment, and removing the stigma of a psychological origin. That doesn't mean you sit on the laurels of this being published. You push for better in future. But recognise the milestone here.

- Recognise the context of the article. The Daily Mail, 1.5 million daily readers in print who are mainly conservative, late middle age, own their own home and read a lot of health stories. For them to read this is good.

- the charges of Murdoch running the government are, I've got to say, fairly hyperbolic. This is a charge that could have been taken seriously in the past (Blair/brown) but not now. The position and dominance of U.K. newspapers has shifted in response to competitors that didn't exist 10, even 5 years ago.

- when it comes to journalists etc, I think it's helpful for me to explain a little how structured a reporter's day typically is. Sometimes they'll come with their own pitch. Often they'll be assigned a story by an editor at morning conference. They'll basically write this to spec for the next day's edition. Word count, focus, etc. The headline will be written by someone else. This isn't an area where there's wide-ranging ability to be creative and dig deeper, there simply isn't time or money.

- which brings me to my last point. I actually think the idea raised of funding someone to do investigative journalism around this subject is a good one. Investigative journalism is very, very expensive. Which is why it's seen a decline as newspapers' profits have been wiped out as well. The economics do not add up, and while a paper may have the odd investigation to keep its credibility it is not something that will keep the enterprise afloat.

Look at the Guardian - wikileaks, snowden, etc etc, and absolutely swimming in debt. Many newspapers are on various levels of the same financially disastrous scale. So I think it's a good idea to try and fund someone. The trick is who, and for what motive - self-publishing is definitely an option, but if they're going to be pitching to other outlets then you need their buy-in too.

Edit and full disclosure, I am employed at a company that's owned by Rupert Murdoch, feel free to google if you want to know exactly which.

Cheers,