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

[Jonathan Edwards]

It suits the purposes of the SMC to present themselves as neutral and unbiased, presenting only "the best scientific evidence and expertise" without any agenda. And it suits the purposes of UK journalists to take these claims at face value and refrain from looking too closely at how biased the SMC actually is.

I have got the impression from two heavyweight journalists recently that their view of SMC has changed significantly in the light of recent behaviour.

Interesting that the PACE club seem to have gone bit quiet this time.

 

[Sidereal]

I think this is a great article as far as the UK media goes and I applaud this journalist for taking on this challenging subject. I think he went about as far as he can go without getting the phone call the next day.

Sure, the Daily Mail is a tabloid-tier publication but on the plus side, it has a very wide readership globally including in the US. I've seen a claim that it's among the top 3 media outlets in the world in terms of traffic. (No doubt in part due to its semi-pornographic sidebar.)

The Guardian on the other hand is a dying newspaper in dire financial straits. The sorts of people who believe what they read in it are elderly socialists and quinoa-munching young hipsters who think the mind is very powerful, who are into all this new age mind-body nonsense. The left-wing media is not our friend, actually. The 1968 college campus counterculture radicals are now the Establishment and they don't believe in biology. For all their screeching about disability cuts they're exactly the sorts of people to support worthless interventions like psychotherapy and exercise. And let's not forget that it was the Guardian that gave Peter White a platform to misrepresent and slander the preliminary PACE reanalysis that appeared on the Virology blog.

I don't agree that the article should have discussed biological science more. Nothing has been published that is prime time ready in my view. There is an enormous amount of bad biological science on ME and even worse press releases which make us look like a joke. There are some fascinating leads but nothing yet to hang your hat on.

Of course, if the Phase III RTX trial is positive then all bets are off and we need to go on a media blitz with this.

 

[Barry53]

I have got the impression from two heavyweight journalists recently that their view of SMC has changed significantly in the light of recent behaviour.

That is a major shift forward in its own right, and something the BPS brigade have striven hard (all too successfully until very recently) to prevent. We need journalists like these to help others to see (and seek) the truth - they are very much an endagered species at the moment!

 

[wdb]

https://twitter.com/i/web/status/897782067676811264

 

[trishrhymes]

The sorts of people who believe what they read in it are elderly socialists and quinoa-munching young hipsters who think the mind is very powerful, who are into all this new age mind-body nonsense. The left-wing media is not our friend, actually. The 1968 college campus counterculture radicals are now the Establishment and they don't believe in biology.

Hey, careful what you say about us old 1968 college campus counterculture radicals (happy days). Some of us stayed radical and anti-establishment and are now quinoa munching believers in biological science.

 

[Sidereal]

Hey, careful what you say about us old 1968 college campus counterculture radicals (happy days). Some of us stayed radical and anti-establishment and are now quinoa munching believers in biological science.

I wrote that post while munching quinoa.

 

[lilpink]

https://twitter.com/i/web/status/897782067676811264

This is a rather wonderful tweet in that as presented here it looks like Burne is wearing a paper hat made from his own article... I feel a meme coming on

 

[markielock]

I have been reading the aggressive 'worst rated' comments and have been thoroughly enjoying seeing the really calm, considered and informed responses from the community (with plenty of data and experience to back up their counterpoints).

"Indeed, one expert witness for the researchers drew parallels between these ME/CFS 'activists' and animal rights groups, suggesting there was a serious risk of violence to researchers if the data was released."

Yeah... Whatever. A violent end to your reputation maybe.

 

[Demepivo]

https://twitter.com/i/web/status/897782067676811264

Expanding Jerome Burne's Facebook page mentioning the SMC & ME/CFS in the tweet above.

Can anybody find the FB URL?

 

[Invisible Woman]

Well... maybe we should crowdfund some articles?

Then there's how to get 'em published....

 

[Binkie4]

https://www.theguardian.com/society/2002/mar/30/health.lifeandhealth?fref=gc

An earlier article by Jerome Burne.

 

[RogerBlack]

I'm glad it's progress. But just for the record, this is not about me or Ron. It's about the SCIENCE and the lack of treatment for suffering patients.

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.

 

[Snowdrop]

In addition to limiting what is said about PACE, these libel laws have also likely contributed to the ability of the psychosocial school to run rampant over the past few decades. It is simply too risky for other academics to challenge them, and risk their own careers and assets being lost in the process, not to mention the hassle of a court case.

The usual "I'm so not an expert disclaimer". But if a law is ineffective at safeguarding justice perhaps it could be challenged not by one person standing up and sticking their neck out but by 100's or even thousands challenging the BPS shite. Would they not have a difficult time bringing a libel case against so many people? <end of dream sequence>

 

[Deepwater]

I think this is a great article as far as the UK media goes and I applaud this journalist for taking on this challenging subject. I think he went about as far as he can go without getting the phone call the next day.

Sure, the Daily Mail is a tabloid-tier publication but on the plus side, it has a very wide readership globally including in the US. I've seen a claim that it's among the top 3 media outlets in the world in terms of traffic. (No doubt in part due to its semi-pornographic sidebar.)

The Guardian on the other hand is a dying newspaper in dire financial straits. The sorts of people who believe what they read in it are elderly socialists and quinoa-munching young hipsters who think the mind is very powerful, who are into all this new age mind-body nonsense. The left-wing media is not our friend, actually. The 1968 college campus counterculture radicals are now the Establishment and they don't believe in biology. For all their screeching about disability cuts they're exactly the sorts of people to support worthless interventions like psychotherapy and exercise. And let's not forget that it was the Guardian that gave Peter White a platform to misrepresent and slander the preliminary PACE reanalysis that appeared on the Virology blog.

QUOTE]

Sadly I have to say that, in my experience you are right about middle-class lefties - and I say so as a lifelong middle class leftie. Their Achilles heel (not mine any more, I have enough problems with my ankles and knees) is their uncritical belief in the power of the mind. It's a pseudo-intellectual substitute for religion and makes them feel like very spiritual people, but has actually unwittingly opened a wee trap door into hell for those who can't keep up. Everyone, left and right, is susceptible to the temptation to pick on another group of people to look down on. The left wing have quite rightly denied themselves the right to racism, sexism, class snobbery and homophobia, and have - ironically - instead snapped up people sick with diseases that medicine cannot totally explain - I say ironically because the sick are perhaps the most vulnerable group of all. Shame on a generation of Guardian readers who have lapped this stuff up! The most sneering reaction to my illness I ever received outside of medical appointments was from a very socially concerned left-wing liberal with an art degree and daughters who had both become social workers. It's a funny old world, no?

 

[Valentijn]

Would they not have a difficult time bringing a libel case against so many people?

Not really. Hence I expect that no bold public statements will be made until there is pretty airtight proof supporting those statements. In the Wakefield case, for example, there was already an investigation by a reporter which found a conflict of interest prior to him publishing the article exposing Wakefield.

So the problem becomes getting an investigation into wrong-doing started, while not being allowed to really accuse them of wrong-doing. I suspect that is why these people hate and fear the Freedom of Information Act so much. It allows access to a lot of data without having to first prove anything (theoretically) or make any accusations.

 

[user9876]

The usual "I'm so not an expert disclaimer". But if a law is ineffective at safeguarding justice perhaps it could be challenged not by one person standing up and sticking their neck out but by 100's or even thousands challenging the BPS shite. Would they not have a difficult time bringing a libel case against so many people? <end of dream sequence>

It reminds me of Robert Maxwell who everyone knew was dodgy but were afraid of being sued.

The more interesting case was the McLibel case where McDonalds discovered it is not good to sue poor people with nothing to loose especially when they are capable of defending themselves.
https://en.wikipedia.org/wiki/McLibel_case

 

[Esther12]

A lot of people on the left hate the Guardian-style left, for many of the reasons discussed here.

There was good commentary on the PACE trial on the Canary, one of those new left-wing sites that rapidly became very popular:

http://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/

 

[Tally]

There is a very precise reason. The reason why we are not getting this sort of coverage from the UK paper that usually exposes corruption and champions the ordinary person is that the journalist who has dealt with bad science at that paper in the past would lose all job prospects if he criticised PACE. If you criticise PACE in the UK there is a quiet phone call to your employer and the next morning you are asked to a meeting to reconsider your contract. I get emails from people to whom this has happened. The only reason why I am the only UK academic to call out on PACE is that I am retired so do not have an employer.

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?

Even if by some miracle things change for us, is it really ok to let the same thing happen to the next group of people?

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.

 

[Molly98]

It reminds me of Robert Maxwell who everyone knew was dodgy but were afraid of being sued.

The more interesting case was the McLibel case where McDonalds discovered it is not good to sue poor people with nothing to loose especially when they are capable of defending themselves.
https://en.wikipedia.org/wiki/McLibel_case

Yes and this has been my thought for a while.
I they were to sue for liable they would have to face their dirty laundry and everything that they have wanted to stay hidden coming out in court in public, this is the opposite of what they want and exactly what we want, the whole world to know the truth, corruption, cruelty and abuse. In my opinion it would ruin them and be the best possible result for us.

They may like threatening to sue or at least one we know does but are they really going to risk their reputations and careers, I doubt it.

It would be the best not the worst thing.

I think back also to the seeds of change women. Who broke into a military base and smashed up a jet plane destined for Indonesia which would then be used to bomb and terrorise the people or East Timor.

The women were taken to court and the whole role of the UK supplying arms to Indonesia to then use on innocent civilians was exposed widely, the UK government embarrassed and humiated and the women who were tried by jury found not guilty as people were so repulsed and disgusted by the harm they saw being done to innocent men women and children.

 

[Molly98]

Well... maybe we should crowdfund some articles?

Then there's how to get 'em published....

I actually think this is an idea worth considering. David Tuller has just managed to crowd fund his salary for a year, could we not crowd fund a independent investigative journalist in the UK for a year to work as Tuller counterpart in the UK to deeply research and expose this?

It can be done because it just has