Scientists trade insults over ME (JHP special issue)

[Daisymay]

I have found this a bit tricky to navigate because I feel it is right to point out that it was the patients who got things moving and did the analysis. I have tended to say patients objected first and now it is academics (without any suggestions about the motivation though). Maybe from now on I should drop the nicety. After all the patients have admirably demonstrated academic credentials.

Unfortunately I think some of my professional colleagues supporting the PACE critique have muddled it up with the physical/psychological distinction - particularly in the early days. I see the evidence for biological changes and the Norwegian studies as completely separate issues. This is about bad science that is potentially harmful and certainly getting in the way of good management.

Yes, bad science but surely pivotal, essential to allowing that bad science to occur is the whole physical/psychological issue with the PACE authors actively ignoring all the biomedical evidence which allowed them to base the trial on the false premise that it is a behavioural disorder treatable with CBT/GET.

The Declaration of Helsinki states that research should be based on the extant research base, PACE wasn't, of necessity it ignored all the biomedical evidence.

Many people reading the PACE trial will assume there is no biomedical evidence, that the authors are adhering to basic scientific principles.

And were the ethics committees, the funding bodies, aware PACE was based on a false premise?

 

[Seven7]

To those that can post comments (I can't for some reason) make sure to link a few of the biomedical good reaserch when they say there is not evidence! plsssssssss!

 

[wdb]

inews have picked it up too now

‘You’re a disgusting old fart neoliberal hypocrite’ – scientists in furious row over ME study
https://inews.co.uk/essentials/news...rious-row-pace-trial-journal-special-edition/

 

[Neunistiva]

Could we ask patients organizations to make a clear statement that patients don't fear psychological label but have issues with methods in the trial, and fear that research money will be endlessly spent on already disproven hypotheses? Then it could be disseminated to journalist at every opportunity.

I know plenty of organizations have said this already, but it may be helpful to have a statement that just focuses on this?

 

[Binkie4]

@RogerBlack @Stewart

Thank you for improving my knowledge of journalism.....doubly!

 

[Jonathan Edwards]

Could we ask patients organizations to make a clear statement that patients don't fear psychological label but have issues with methods in the trial, and fear that research money will be endlessly spent on already disproven hypotheses? Then it could be disseminated to journalist at every opportunity.

I think this is a significant point. I worry that when patient organisations talk to journalists they give the impression that a problem with the PACE trial is that it assumes a psychological basis for ME. But that is not a vlid criticism. You could say that the rituximab trial assumes a B cell basis for ME or that a calcite trial assumes a viral basis and they might all be equally wrong.

The problem with the PACE trial is that it is a bad piece of science in terms of the methods used.

 

[Philipp]

I think our no.1 task is to make it clear that ME can affect anyone and there's very little you can do to prevent it because atm lots of people look down on us as physically or mentally compromised which would never happen to them…

This train of thought may warrant its own thread, but... can anyone prove conclusively that ME is NOT transmissible via blood, and therefore any blood bank is clean of bags with potentially infectious agents? The counterargument will be 'there is no evidence that ME is infectious/transmissible', ours will be 'yeah because we don't know the cause so there can be no evidence if we can't test for it, absence of evidence is not the same as evidence of absence obviously'. There have been people on here claiming they got sick after blood transfusions.

I think this is something that a good journalist should look into, if possible juxtaposed with a money trail as to why the biological research was underfunded for the last 50+ years despite ME (potentially) affecting half as many people as HIV does.

 

[RogerBlack]

There have been people on here claiming they got sick after blood transfusions.

In principle, this is a thing a suitable clinical registry could search for, but I'm unsure that any will tie easily back to the donor.

Ideally you'd want something like 'what are the CFS diagnosis statistics of people getting blood from donors with and without a diagnostic history of CFS'.

However, unless it's a national database, you rapidly run into quite small numbers.

Infectious cause is certainly not the whole of it, because most people facing the (presumed) infectious trigger don't get CFS.

Transient CFS-like illness post transfusion might be as interesting, but probably not attributable if it happens for the short term.

 

[Woolie]

More to the point, what would his defence be for PACE? My impression from elsewhere on PR is that he is a very competent scientist, so he must realise that fluffy words just don't cut it, and instead requires concrete reasoning that can stand up to real peer review. Where is he really going to go with that for PACE?

Obviously, things were very out of control in the management of this special issue. We can see that from the emails. Its very possible GDS had a non-PACE reason for quitting. And given some of the things that have been happening, and what's been said, that could have been perfectly legitimate.

I would suggest we leave him alone.

PS I do not trust either side of the story, and I'm certainly not willing to take the Coyne account of GDS as gospel.

 

[Luther Blissett]

Former trotskyite disgusting old fart neoliberal hypocrite, please. Coincidentally the SMC was set up by former Revolutionary Communist Party members now known as the LM Network. Originally I think they were supposed to infiltrate the establishment for the cause, but once there they decided that getting their snouts in the trough was more fun.

For a bit of background, the Revolutionary Communist Party were always looked upon by members of the Radical Left as either:

• Being paid by the security services and or corporations to infiltrate left movements and causes and to inform on them
  
• Being too stupid to be paid and doing it for free
• Trying to move people away from being against the state and corporatism, towards just being against the state. (i.e. right wing anti-state)
  
• Just stupid
• A stupid cult

Most online accounts are scathing of the RCP, with many anecdotes involving liberal amounts of mockery of their antics and professed views.

If you look up their career paths and political views, you can make your own judgment about the correctness of the views at the time.

 

[Wolfiness]

I'm too ashamed of Coyne to share this on my Facebook. He poisons the well.

 

[Snow Leopard]

PS I do not trust either side of the story, and I'm certainly not willing to take the Coyne account of GDS as gospel.

An excellent point.

 

[Esther12]

The print version cuts the Macleod quote at the end, so it's better for us:

https://scontent-lhr3-1.xx.fbcdn.ne...=75f2d7c9fc2e65c5b29caac689405148&oe=59FABC3E

 

[IreneF]

I don't think so. I think it's getting PACE the attention that it needs. And even in the comments you can see people who know nothing about PACE giggling with delight that the academics are rolling in the mud and pulling each others' hair over this. Perhaps it's more "Jerry Springer" than NPR or BBC, but people are taking notice - and in a forum where they're getting a decent look at both sides of the story.


No, simply using strong language is not abuse. It's insulting and it's disparaging, but no one is being abused by it. Verbal abuse can be a very serious problem, and it trivializes it to label Coyne's justified outrage as abuse.


Exactly. There's a nasty fight going on, but we're staying pretty clean. And we look far more credible when it's someone else doing our fighting for us. It shows that we're worth fighting for, even by someone with no personal connection to our disease.


They had plenty of opportunity (6+ years) to get involved earlier, and didn't. Either because they weren't interested or hadn't heard about it. And now they still have a chance to get involved, with a nice niche waiting for them as the voice of reason.


Better him going a bit over the top than us. And if a good "fuck off" was ever warranted, it's one aimed at the PACE fan club. Of course, it would be great if someone dug into the situation a bit deeper now - to see the real persecution that those researchers have directed toward anyone that challenges them. Not just rude and naughty words, but trying to get people fired, outing their medical conditions, and silencing their voices in journals and even blogs. There's a whole heap of ripe and stinky trash waiting to be uncovered, and it's only just under the surface so there isn't even much digging needed.

It's important to draw a distinction between telling someone what you think of them, even if it devolves into name-calling, and actually threatening or abusing them. I know the laws are different in the UK. Here in the US it is quite difficult to get a conviction for libel or slander.

 

[Sean]

It is quite likely the headline was not written by the journalist, and was over the writers objections, if they even knew beforehand.

This.

The working journos who actually research and write a story typically do not have final say over its contents or the way it is presented in the paper. So be careful about being too critical of them unless you know for sure exactly who is responsible for which bits in a story.

Doesn't mean let them off the hook. But just be a little careful. An individual journo has limited power within the broader organisation to push things. They have to compromise, like all of us.

 

[Sean]

SonOfOdin is trolling hard .

Daddy issues?

 

[IreneF]

This train of thought may warrant its own thread, but... can anyone prove conclusively that ME is NOT transmissible via blood, and therefore any blood bank is clean of bags with potentially infectious agents? The counterargument will be 'there is no evidence that ME is infectious/transmissible', ours will be 'yeah because we don't know the cause so there can be no evidence if we can't test for it, absence of evidence is not the same as evidence of absence obviously'. There have been people on here claiming they got sick after blood transfusions.

I think this is something that a good journalist should look into, if possible juxtaposed with a money trail as to why the biological research was underfunded for the last 50+ years despite ME (potentially) affecting half as many people as HIV does.

When I was diagnosed I was told not to give blood. There wasn't any real discussion of causation, just that the cause was unknown so not to take the chance of spreading it.

 

[IreneF]

In principle, this is a thing a suitable clinical registry could search for, but I'm unsure that any will tie easily back to the donor.

Ideally you'd want something like 'what are the CFS diagnosis statistics of people getting blood from donors with and without a diagnostic history of CFS'.

However, unless it's a national database, you rapidly run into quite small numbers.

Infectious cause is certainly not the whole of it, because most people facing the (presumed) infectious trigger don't get CFS.

Transient CFS-like illness post transfusion might be as interesting, but probably not attributable if it happens for the short term.

Blood transfusions can trigger a variety of problems beyond transmitting an illness, and you have to be in bad shape in order to need one, so it would be difficult to sort out.

 

[Jonathan Edwards]

Obviously, things were very out of control in the management of this special issue. We can see that from the emails. Its very possible GDS had a non-PACE reason for quitting. And given some of the things that have been happening, and what's been said, that could have been perfectly legitimate.

I would suggest we leave him alone.

PS I do not trust either side of the story, and I'm certainly not willing to take the Coyne account of GDS as gospel.

What makes you say that things were out of control @Woolie? It seemed to me that David Marks gave a very fair account of what happened and that his policy was carried through very carefully. What do you 'see from emails' ?

I cannot see any other reason for GDS leaving and since he has previously championed PACE, which is ridiculous from a competent scientist, and has a huge vested interest I see absolutely no reason to doubt Coyne's perspective. I have had the same perspective from others.

 

[Sbag]

This train of thought may warrant its own thread, but... can anyone prove conclusively that ME is NOT transmissible via blood, and therefore any blood bank is clean of bags with potentially infectious agents? The counterargument will be 'there is no evidence that ME is infectious/transmissible', ours will be 'yeah because we don't know the cause so there can be no evidence if we can't test for it, absence of evidence is not the same as evidence of absence obviously'. There have been people on here claiming they got sick after blood transfusions.

I think this is something that a good journalist should look into, if possible juxtaposed with a money trail as to why the biological research was underfunded for the last 50+ years despite ME (potentially) affecting half as many people as HIV does.

In the UK you can't donate blood if you have ME so they must think that is a possibilty