Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Crawley

[JaimeS]

IMO, MEGA had its chance to explain what it was doing and why, and make it clear that what they were doing was on the up-and-up. I really thought the study had promise at first. Now I'm looking at a lot of unanswered questions on their part and a whole heaping helping of privilege: people believing it isn't their responsibility to demonstrate the ethical nature of their study design to a vulnerable patient population. And I don't say 'vulnerable' because we're fragile, but because we have been demonstrably maligned by researchers in the past.

But admitting that -- and admitting that transparency is more important with this patient population than others -- would be acknowledging that things have been mis-handled in the past. By people on your team.

It isn't clear how patients will be selected, what they're planning on doing with the data, what they're looking for -- it is, as Edwards pointed out, a fishing expedition. Now, view that through the lens of who's looking. They'll 'find' whatever it is that they want to find, and they'll spin it however best suits them.

Maybe this is the group's attempt to 'go straight' and get involved in biomedical, verifiable research. But if past is prologue, that's a very optimistic view.

 

[Wolfiness]

Going forward, this stunt of Dr. Crawley’s and the resulting visuals are likely to haunt her career and inflict permanent damage on her reputation.

I adore Oscar Wilde, but his downfall was allowing himself to be goaded by Queensberry into a libel accusation when he knew full well that what Queensberry had written was true.

EC's grasp on reality is probably altogether more shaky, mind you.

 

[jodie100]

I think MEGA will be different to past studies and will take patients' concerns into account:

1.as regards patient selection they are only going to include patients who have post exertional malaise( and I think the patient advisory group will have some say in defining this appropriately) in the study rather than fatigued patients and are going to assess them for meeting various M.E.CFS diagnostic criteria

2.the reasons they give for not using the existing biobank seem valid (too small, patients need to be recruited using identical criteria for the study, need for multiple biobanks for replication of results)

3.one of the disciplines included is psychiatry but they state on their website this is to exclude patients with primary depression and to characterise secondary depression in patients with M.E. This will be helpful in differentiating between biological markers of depression and M.E., and like all chronic illnesses there will probably be people who have co-existing depression in the study sample, so this seems to be a good thing to differentiate the two

4.there is a good blog by Professor Carmine Pariante ,one of the MEGA team, a professor of biological psychiatry on understanding immune and inflammatory symptoms in M.E. on their website , it is interesting to see that he even acknowledges that a proportion of M.E. patients report symptoms of infections at times of exacerbations as well as at onset as it is not something I have seen acknowledged in BPS theories

5.they intend to analyse what subgroups exist within the M.E./CFS population and "then to create a personalised and precise approach to diagnosis and treatment", so I don't think anybody will be diagnosed with a form of M.E. that is not applicable to them as a result of this study, I think it is the nature of the "omics" studies to analyse what exists in a study sample rather than formulate a hypothesis and seek to confirm or refute it as in the more traditional scientific method, so they can only find whatever their high level computerised analysis shows.

I think judged on its own merits MEGA is very promising, just the fact of having a major biological trial under way(if it does go ahead) would probably help decrease the stigma and neglect surrounding. M.E.

 

[AndyPR]

If I had any drawing talent, I could be tempted to write a cartoon series about "Esther Crowley", who goes around "curing" people, who may or may not be ill, with "treatments" of a dubious nature, all the while making wild and utterly untrue accusations against her detractors. Naturally it would be the fruit of my fevered imagination and definitely not based on any actual person.

 

[Wolfiness]

I think MEGA will be different to past studies and will take patients' concerns into account:

1.as regards patient selection they are only going to include patients who have post exertional malaise( and I think the patient advisory group will have some say in defining this appropriately) in the study rather than fatigued patients and are going to assess them for meeting various M.E.CFS diagnostic criteria

They are excluding the severely ill. Enough said.

 

[Yogi]

I think MEGA will be different to past studies and will take patients' concerns into account:

1.as regards patient selection they are only going to include patients who have post exertional malaise( and I think the patient advisory group will have some say in defining this appropriately) in the study rather than fatigued patients and are going to assess them for meeting various M.E.CFS diagnostic criteria

2.the reasons they give for not using the existing biobank seem valid (too small, patients need to be recruited using identical criteria for the study, need for multiple biobanks for replication of results)

3.one of the disciplines included is psychiatry but they state on their website this is to exclude patients with primary depression and to characterise secondary depression in patients with M.E. This will be helpful in differentiating between biological markers of depression and M.E., and like all chronic illnesses there will probably be people who have co-existing depression in the study sample, so this seems to be a good thing to differentiate the two

4.there is a good blog by Professor Carmine Pariante ,one of the MEGA team, a professor of biological psychiatry on understanding immune and inflammatory symptoms in M.E. on their website , it is interesting to see that he even acknowledges that a proportion of M.E. patients report symptoms of infections at times of exacerbations as well as at onset as it is not something I have seen acknowledged in BPS theories

5.they intend to analyse what subgroups exist within the M.E./CFS population and "then to create a personalised and precise approach to diagnosis and treatment", so I don't think anybody will be diagnosed with a form of M.E. that is not applicable to them as a result of this study, I think it is the nature of the "omics" studies to analyse what exists in a study sample rather than formulate a hypothesis and seek to confirm or refute it as in the more traditional scientific method, so they can only find whatever their high level computerised analysis shows.

I think judged on its own merits MEGA is very promising, just the fact of having a major biological trial under way(if it does go ahead) would probably help decrease the stigma and neglect surrounding. M.E.

There is no need to have Crawley on it then. Period.

 

[Mohawk1995]

"Those that do not learn from history are doomed to repeat it" George Santayana

If indeed faults in the previous studies were identified and addressed, then history would not likely repeat. I do not see any of this occurring in regards EC, SW and the CBT/GET mob. Probably "too many cooks in the kitchen" to come up with anything useful anyway. Kind of like NIH/IOM coming up with SEID as a diagnosis. That is especially true when the cooks with big egos are involved.

The shame will be when the baby is thrown out with the bath water. Even something useful, may then be overlooked because the cloud of suspicion is just too great.

 

[Snowdrop]

There is no need to have Crawley on it then. Period.

Except that whatever the findings the UK establishment is bent on CBT/GET as the treatment. And Esther Crawley is the person to deliver on that.

 

[user9876]

I had initially some hope that Mega would be ok but the more Crawley seems to be involved the less hope I have. She has a strong interest in pushing a BPS agenda and doesn't seem to understand the reality of ME.

1.as regards patient selection they are only going to include patients who have post exertional malaise( and I think the patient advisory group will have some say in defining this appropriately) in the study rather than fatigued patients and are going to assess them for meeting various M.E.CFS diagnostic criteria

But it is not clear what they mean by this and it seems quite clear from listening to Crawley talk that she doesn't understand. It is of course why it is important to listen to patients but as a group they don't seem capable of listening - if they did they may understand some of the criticism and improve.

2.the reasons they give for not using the existing biobank seem valid (too small, patients need to be recruited using identical criteria for the study, need for multiple biobanks for replication of results)

They could work in partnership with the biobank instead of setting up a rival. As I understand it they have yet to design any actual experiments so it is not clear what their requirements are. Also they have not decided on criteria. The biobank has the advantage that it includes severe patients.

I do think however, that the biobank probably doesn't have the right samples but I also thing that Mega will fail to collect the right samples. Mainly because I think that multiple samples need to be taken from the same people to help understand the dynamics of ME and what changes with exertion.

4.there is a good blog by Professor Carmine Pariante ,one of the MEGA team, a professor of biological psychiatry on understanding immune and inflammatory symptoms in M.E. on their website , it is interesting to see that he even acknowledges that a proportion of M.E. patients report symptoms of infections at times of exacerbations as well as at onset as it is not something I have seen acknowledged in BPS theories

There is a review he made of a paper where he insisted that they added in BPS theories. So I have very little confidence in him. He might have changed his views but he was given funding from the MRC to study ME and I think thus far we have only had a BPS type questionnaire paper.

5.they intend to analyse what subgroups exist within the M.E./CFS population and "then to create a personalised and precise approach to diagnosis and treatment", so I don't think anybody will be diagnosed with a form of M.E. that is not applicable to them as a result of this study, I think it is the nature of the "omics" studies to analyse what exists in a study sample rather than formulate a hypothesis and seek to confirm or refute it as in the more traditional scientific method, so they can only find whatever their high level computerised analysis shows.

Lots of intentions but to judge we need details. Given the people involved and what they say publicly I have little confidence that they will collect the right samples and do good work.

 

[JaimeS]

and I think the patient advisory group will have some say in defining this appropriately

What makes you think so?

Their goal for number of patients straightaway demonstrates serious concerns. Where do they suppose they will FIND that many local patients with ME/CFS? They don't suppose -- they're planning on using the least stringent possible criteria, as they have done in the past.

one of the disciplines included is psychiatry but they state on their website this is to exclude patients with primary depression and to characterise secondary depression in patients with M.E.

It's not that "a psychiatrist" is involved. Hornig has a background in neuropsychiatry. Jason has a background in psychology. You don't see patients getting all het up when they're involved.

We're not talking psychiatry versus not-psychiatry. We're talking people with ethical behavior towards patients versus people with blatantly unethical behavior towards patients. "End of."

I think it is the nature of the "omics" studies to analyse what exists in a study sample rather than formulate a hypothesis and seek to confirm or refute it as in the more traditional scientific method, so they can only find whatever their high level computerised analysis shows.

You can get genetic research to, quite literally, say ANYTHING. Here we go: let's say that people who are depressed are more likely to have Mutation Y on Gene X. Let's say that's actually an immune deficiency by an unusual mechanism that would not necessarily be recognized as such. Perhaps some pathogens have enough effect on brain chemistry to make one depressed. Let's suppose some ME/CFS patients also have this immunodeficiency. However, having an immunodeficiency doesn't make you a depressed person. Doesn't matter -- now ME/CFS patients have a gene that "makes them depressed".

See how easy that was?

-J

 

[BurnA]

"End of."

Ponting has a lot to answer for.

 

[jodie100]

What makes you think so? .

I think this is the case based on this answer from Q &A, question no.3 on the MEGA website "The Patient Advisory Group will decide how best to identify and define post-exertional malaise and work with the specialists on the Scientific Team to hone this definition."

I will try to come back to your other points tomorrow as my brainfog is too much to think about them clearly at the moment and I want to consider them properly.

 

[JaimeS]

At this point, the argument boils down to, "I feel / hope / pray that the BPS school won't have as much effect on the study or how its findings are reported as we all fear".

It's not exactly an argument from strength.

 

[BurnA]

At this point, the argument boils down to, "I feel / hope / pray that the BPS school won't have as much effect on the study or how its findings are reported as we all fear".

It's not exactly an argument from strength.

At this stage MEGA must never be allowed to happen and the goal should be the complete disbandonment of the CMRC.

Those individuals and organisations who remain with the CMRC are doing a disservice to patients. There should be no more sitting on fences or being a cautious member, charities need to nail their colours to the mast and move on. Anyone who supports an organisation with EC as a deputy chair does not have patients interests as their priority. Chris Pontings tweet was a disgrace. Who is he to lecture to us what we desperately need?

This sorry saga might lead to some good if we can build a community united against the CMRC.

 

[alex3619]

Jason has a background in psychiatry.

Just clarifying things a bit, I think Leonard Jason has a background in social psychology, and has demonstrated repeatedly that even such imprecise areas of research can have rigorous investigatory methodology.

 

[JaimeS]

Leonard Jason has a background in social psychology

Fixed, thank you for catching that.

 

[NelliePledge]

Except in the football analogy the Holgate full support for Crawley and the BPS model as a whole is Arsene Wenger at Arsenal, brings in millions of pounds, makes no progress, talks a good game, lives in denial, decades and counting.

But here's the thing, when the manager seems un sackable because of a dysfunctional board the next move is to sack the board.

What do we want? Holgate out!! When do we want it? Now!.....

OMG Donner don't talk about specific football teams very dangerous ground worse than religion or politics.

You didn't mention his catch phrase "I didn't see that" when his team do dodgy stuff and his theatrical Gallic arm waving at supposed infringements by opponents. Mm I'm beginning to see what you mean about similarIties with BPSites.

Wenger is not a popular man where I come from and less so after his latest visit. Normally we enjoy his arm waving we've even got a special song we sing just for him.

 

[Luther Blissett]

I like my grocer to be able to tell the difference between apples and oranges.

I'd like researchers to be able to tell the difference between ME and fatigue.

¯\_(ツ)_/¯

 

[Forbin]

When boards close ranks...

 

[Snow Leopard]

Just clarifying things a bit, I think Leonard Jason has a background in social psychology, and has demonstrated repeatedly that even such imprecise areas of research can have rigorous investigatory methodology.

The point is that Jason has done studies on psychological aspects, along with CBT and GET studies - yet he gets a very different response.