Gizmodo Article:The Battle to Finally Understand Chronic Fatigue Syndrome

[Sasha]

What's wrong with IiME or for that matter the 25% Group which actually focuses on serious patients. It's not a matter of good voices being available. The SMC is feeding prepped scripts etc to the media.

My impression of IiME is that it's too focused on getting research done to have spare capacity for this kind of stuff - and I don't know that I've ever seen them quoted in the national press. I don't know about the 25% group. I don't know if any of these groups have the training or backgrounds to do this well, especially given that they seem to be up against a machine. Whereas #MEAction is geared up specifically for this and is led by someone who was a journalist.

It's not a competition, though - the more the merrier. But also, horses for courses.

 

[Sean]

But looks like the FoI act will be scrapped in the UK or severely limited as there is a commission sitting in secret looking at it.

Oh dear, my new replacement irony meter just exploded. Again.

This is getting expensive.

 

[user9876]

Oh dear, my new replacement irony meter just exploded. Again.

This is getting expensive.

I was exaggerating a little

http://www.theguardian.com/politics...commission-not-very-free-with-its-information

But its not good for the FoI act

 

[Dx Revision Watch]

Paul Davies of RIME has not been active for a number of years.

 

[Jonathan Edwards]

The biggest impression I get is that she doesn't quite understand the issues. But I noticed in the comments Mary Dimmock say she feels her comments were taken out of context and didn't reflect the point she was making. I felt that @Jonathan Edwards comments were taken out of context to suggest he or IiME were setting up a rival to CMRC when he has supported the CMRC and the European initiative is a different thing pulling in a wider group of researchers (and potentially EU money).

Yes, I agree, she does not seem to understand that to write usefully n subject you have to have an opinion on the basic facts that reflects adequate understanding. I find it infuriating that all these articles report PACE as showing that CBT and GET worked, when it showed nothing of the kind. If you start just by repeating what the paper concluded then that's about that.

I spoke to her on the phone and emailed and most of what she quotes of me would be fair enough if the article started on the right foot. I do not disagree with the research approach of CMRC, just with the gagging clause. And the gagging clause seems to me more or less dead since various people including me seem to be succeeding to do all the things the clause seemed to be there to stop!!

EMERG is a rival to CMRC in a sense but only in the sense that all science involves people competing and so all organisations to some degree compete - but no more than the Arthritis Research Campaign and MRC might be rivals in the arthritis field.

I fear journalists want to find 'human stories' in the journalistic sense when what they should be doing is reporting real human stories - none of which ever quite fits the stereotype.

 

[Scarecrow]

I spoke to her on the phone and emailed and most of what she quotes of me would be fair enough if the article started on the right foot. I do not disagree with the research approach of CMRC, just with the gagging clause. And the gagging clause seems to me more or less dead since various people including me seem to be succeeding to do all the things the clause seemed to be there to stop!!

Are you sure that it is a gagging clause? It doesn't prevent discussion of research, it prevents abuse of researchers.

I've chosen to take the clause at face value. I will find the clause and post it here.

 

[Seven7]

Who is Virginia Gewin - Mosaic before I reply????

 

[Scarecrow]

I've chosen to take the clause at face value. I will find the clause and post it here.[/QUOTE]

Members must:
3.1.3. Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.

3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research.

 

[Jonathan Edwards]

I've chosen to take the clause at face value. I will find the clause and post it here.

[/QUOTE]

The question then comes as to what falls within the definitions. I am fairly sure that FOI requests are considered the paradigm of harassment. That I find hard to defend in view of what the requests have been.

 

[Wildcat]

.
'...the secret to the UK collaborative’s success, according to Holgate, is a membership charter that forbids harassment or abuse of researchers. .........
The charter has already been tested a couple of times, says Holgate, who gave the aggressors a choice: apologise or leave. He’s even suggested that he’ll disband the collaborative completely if all parties don’t play by the rules,,,'.

http://gizmodo.com/the-battle-to-finally-understand-chronic-fatigue-syndro-1741658406?trending_test_e&utm_expid=66866090-62.YkETBcIMTk2uX1oytHipyg.5&utm_referrer=https://www.google.co.uk


When and how was the CMRC Charter 'tested'. And which charities or other CMRC members were "aggressive" and were told to 'apologise or leave' by Professor Stephen Holgate? When did those supposed events take place? Were they written up in CMRC Meetings releases? Are there any records at all? Did those things ever actually happen?

.

 

[Scarecrow]

The question then comes as to what falls within the definitions. I am fairly sure that FOI requests are considered the paradigm of harassment. That I find hard to defend in view of what the requests have been.

But isn't that certain researchers using the FOI to hide behind, i.e. it's alleged "harassment" under the FOI Act. The CMRC charter is an entirely different affair.

I'll be putting this to the test by writing to the collaborative and detailing my (very small) part in recent events. I'll be citing the Gizmodo article and asking them if my actions constitute harassment. I may soon be an ex associate member of the CMRC.

 

[A.B.]

I am fairly sure that FOI requests are considered the paradigm of harassment.

There is a document in which one of the researchers says that FOI requests are the most damaging form of harassment. Which is something that these "patients are irrational extremists" stories never mention.

These efforts to protect researchers from harassment look like an attempt to protect bad science from being discredited.

 

[Dx Revision Watch]

On the assumption that Prof Holgate did make these statements and has not been misquoted by the journalist:

If these alleged transgressions by selected of the patient organizations that are full members of the UK CMRC are considered worthy of being placed in the media by Holgate, why were they not minuted at the time in order that public and professionals with a stake in the UK CMRC can scrutinize what was said, by whom, and the manner in which these were dealt with, at the time, or subsequently?

If there is no transparency around alleged incidents how can the public decide whether whatever was said by whichever patient org(s) at whatever meetings of the UK CMRC was "harassment or abuse of researchers" or whether it constituted legitimate criticism.

 

[Dx Revision Watch]

There is a document in which one of the researchers says that FOI requests are the most damaging form of harassment. Which is something that these "patients are irrational extremists" stories never mention.

These efforts to protect researchers from harassment look like an attempt to protect bad science from being discredited.

That's the Jane Colby document compiled from FOI material that I posted in this thread:

http://forums.phoenixrising.me/inde...it-the-uk-research-collaborative.41010/page-4

PDF here:

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

 

[Dx Revision Watch]

The question then comes as to what falls within the definitions. I am fairly sure that FOI requests are considered the paradigm of harassment. That I find hard to defend in view of what the requests have been.

If 168 assorted MPs or journalists had submitted FOI applications requesting release of various data, would PACE Trial PAs be whimpering about "harassment", too?

But then they also stated in the Jane Colby document under heading "Harassment"

"House of Lords Debates on CFS/ME can result in Parliamentary Questions which often require detailed responses."

Well, tough.

 

[Cheshire]

These efforts to protect researchers from harassment look like an attempt to protect bad science from being discredited.

Willingness to Share Research Data Is Related to the Strength of the Evidence and the Quality of Reporting of Statistical Results

Jelte M. Wicherts, Marjan Bakker, Dylan Molenaar

PlosOne

2011

http://www.plosone.org/article/fetc....1371/journal.pone.0026828&representation=PDF

Abstract
Background
The widespread reluctance to share published research data is often hypothesized to be due to the authors' fear that reanalysis may expose errors in their work or may produce conclusions that contradict their own. However, these hypotheses have not previously been studied systematically.
Methods and Findings
We related the reluctance to share research data for reanalysis to 1148 statistically significant results reported in 49 papers published in two major psychology journals. We found the reluctance to share data to be associated with weaker evidence (against the null hypothesis of no effect) and a higher prevalence of apparent errors in the reporting of statistical results. The unwillingness to share data was particularly clear when reporting errors had a bearing on statistical significance.
Conclusions
Our findings on the basis of psychological papers suggest that statistical results are particularly hard to verify when reanalysis is more likely to lead to contrasting conclusions. This highlights the importance of establishing mandatory data archiving policies.

 

[Dx Revision Watch]

Full FOI Act 2000 here:

http://www.legislation.gov.uk/ukpga/2000/36/contents

 

[Sasha]

The question then comes as to what falls within the definitions. I am fairly sure that FOI requests are considered the paradigm of harassment. That I find hard to defend in view of what the requests have been.

As James Coyne has said, there is no ME police force who can check if individual PWME are sending in FOI requests in such numbers as to cause problems.

People are sending in these requests because the reporting in the PACE trial is so poor and the main analyses were changed mid-stream and not reported. Of course lots of people are requesting information.

 

[Dx Revision Watch]

.When and how was the CMRC Charter 'tested'. And which charities or members were "aggressive" and were told to 'apologise or leave' by Professor Stephen Holgate? When did those supposed events take place? Were they written up in CMRC Meetings releases? Are there any records at all? Did those things ever actually happen?

If Prof Holgate did make these statements (and to the best of my knowledge he has yet to issue any counter statement) then he should be prepared to be accountable for his statements.

I really do not like the way this is going...

Has any other patient group in the UK, its registered patient organizations and the parliamentarians and professionals who are its allies and advocates been subjected to this level of control and suppression of criticism?

Are the charity orgs that are signed up to the UK CMRC going to sit on their hands and let this happen again? If they are, none of them are fit to represent the interests of the patients and their carers they have been elected to represent, or for whom they are paid very nicely to represent.

 

[Sidereal]

The FOI requests are happening in such large numbers because their work is of an unacceptably poor quality yet being used as a weapon against PWME in the NHS and welfare. There is no orchestrated campaign of harassment.