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

[Binkie4]

It was so clear that CMRC was a scam. Why did the other charities go along with it is the question?

@Yogi

AfME has been adrift/ in bed with the BPS school for many years so it was a natural choice.

I agree with your question as it relates to MEA. I think they could bring the leadership patients want which is not membership of the CMRC.

"MEA would serve the community best by separating. While both charities are in CMRC AfME is the 'official' channel and spokesorg of all things ME -- the go to org. I cannot say this enough. The MEA do not have the same influence with the outside media that are happy to continue promoting the party line. Having a charity that stands against themwould mean that for balance media must have both views as patients support the charity that represents them."
@Snowdrop

Above in quotes should be yellow box - apologies

 

[jodie100]

Penny's just dropped that 'cross-disciplinary' may be MEGA-speak for 'bio-psycho-social'.

MEGA is definitely not BPS. If you look at their website you will see that they say it is a biological study and that "the MEGA consortium has brought together many experts from a wide range of different disciplines across genetics, genomics, metabolomics, pain research, proteomics, psychiatry, sleep research and transcriptomics." I think it has huge potential to help M.E. patients.

 

[Snowdrop]

Penny's just dropped that 'cross-disciplinary' may be MEGA-speak for 'bio-psycho-social'.

I've tried to find this post on twitter but cannot. Was going to comment something along the lines of what @BurnA said.

Edit: sorry meant to quote the post with the Anton Meyer/Chris Ponting twitter feed.

 

[Kati]

MEGA is definitely not BPS. If you look at their website you will see that they say it is a biological study and that "the MEGA consortium has brought together many experts from a wide range of different disciplines across genetics, genomics, metabolomics, pain research, proteomics, psychiatry, sleep research and transcriptomics." I think it has huge potential to help M.E. patients.

@jodie100 it has been shown time and time again that those who are associated with the british paychiatrists and associated with MEGA including Esther Crawley have not demonstrated capacity (or willingness) to discriminate fatigued patients from ME patients. This is a huge problem in moving forward as it would affect all biological report, leading to negative or null results which in turn would further delay science and access to treatments worldwide.

 

[A.B.]

MEGA is definitely not BPS. If you look at their website you will see that they say it is a biological study and that "the MEGA consortium has brought together many experts from a wide range of different disciplines across genetics, genomics, metabolomics, pain research, proteomics, psychiatry, sleep research and transcriptomics." I think it has huge potential to help M.E. patients.

They say.

Looking at the plans they have disclosed, the two concrete things they want to do are 1) establishing a biobank (a place where blood samples and patient data is stored), which is a waste of resources because there already exists a good one, and 2) having patients fill out symptom questionnaires. These questionnaires include data on depression, anxiety, PEM, fatigue, etc. They have refused to clarify what they even mean with PEM and it could be a distorted definition. The fatigue, anxiety, depression questionnaires are perfect for the BPS crew and they will use them to further their agenda.

They had planned to apply for funding for the biomedical studies later. There is no guarantee that any biomedical research proposals will be accepted. We don't know any details about these future biomedical studies. They could be of little value. For all we know, MEGA could just be a trojan horse for Crawley to get 10000 fatigue/anxiety/depression questionnaires filled out, while the biomedical studies based on the MEGA biobank end up being overambitious and never funded, or lacking depth due to funding limitations, or suffering from other problem. A major concern is that Crawley could introduce a misleading definition of PEM which would obscure real PEM and falsely attribute PEM to people that don't have it, creating confusion. It seems unlikely Crawley would truly acknowledge PEM because it means accepting that exertion objectively increases impairment while she has built a career on the idea that patients can reduce impairment with exercise. If MEGA went ahead, I would expect it to define PEM so that it doesn't conflict with GET.

We patients deserve better. There is no good reason why MEGA should suffer from any of these problems. Good research advances knowledge, bad research misleads and prevents progress. I think we're better off waiting for a better project of this type to support.

 

[slysaint]

If you look at their website you will see that they say it is a biological study

I had to laugh. Since when do they 'tell it like it is' on their website or elsewhere?
MEGA (if it gets off the ground) will provide EC (with her epidemiologists hat on) to play with a lot of very broadly acquired data. Prof Davey-Smith (reknowned epidemiologist) will add credibility to this.
Only after this will any real biological research happen, if at all. Meanwhile this will be put forward as the 'definitive' study used to justify what ever comes afterwards.........

 

[Snowdrop]

MEGA is definitely not BPS. If you look at their website you will see that they say it is a biological study and that "the MEGA consortium has brought together many experts from a wide range of different disciplines across genetics, genomics, metabolomics, pain research, proteomics, psychiatry, sleep research and transcriptomics." I think it has huge potential to help M.E. patients.

The research is led by Esther Crawley.

If you look at the funding application submitted to Wellcome Trust (which was denied) you will see that there is not enough money being sought to support the amount of biomedical research being suggested (biomedical research being much more expensive than some questionnaires). The amount of money being sought for the first part (with no guarantee whatsoever that there will be a second part) is too small for the biomedical research being proposed. All of the omics are very costly and robust research would require a large sample.

Last, PACE was promoted in a way that was disingenuous pretending they were going to include actometers etc (objective measures). There is the issue of whether there is good faith in conducting the research with integrity and a strict adherence to good/excellent research practices (an example would be which criteria are used as definition for inclusion in the trial).

To believe that MEGA is going to be useful biomedical research is to count on the integrity of the community of researchers that have each others backs and will not rock the (b)PS boat as seen over and over again.

In other words, of course it looks good on paper -- they know they can't offer something that looks like PACE. But is there any real will among this group to change course. EC's career depends on treating chronic fatigue with the model she has espoused.

Just imagine if possible if this is the reality and you are being hoodwinked as is the way they operate the horror when we get to the end of the research and it changes nothing but is spun to reinforce present prejudices. They cannot be trusted.

 

[Large Donner]

lets hope its "full support" of the type that prime ministers give to cabinet ministers and football clubs give to managers they end up sacking in a weeks time

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!.....

 

[Jonathan Edwards]

@jodie100 it has been shown time and time again that those who are associated with the british paychiatrists ...

Was that a Freudian slip Kati?

 

[Kati]

Was that a Freudian slip Kati?

Uhm... please clarify i don't see where i slipped? Foggy with a chance of rain here

 

[Jonathan Edwards]

MEGA is definitely not BPS. If you look at their website you will see that they say it is a biological study and that "the MEGA consortium has brought together many experts from a wide range of different disciplines across genetics, genomics, metabolomics, pain research, proteomics, psychiatry, sleep research and transcriptomics." I think it has huge potential to help M.E. patients.

But surely this is exactly BPS - a bit of bio and a bit of social and don't forget the psychological...

It sounded great but as someone who sticks purely to the bio it all began to unravel when it became clear that it was nothing more than a fishing exercise of 'let's do everything without thinking'. 'Experts' are often self styled. I have learned to be pretty cynical about people who claim to have 'got together the best experts'. The good people just quietly get on with the work. The initial application just duplicated what had already been done by the School of Hygiene team - and rightly got thrown out as a result. It all looks incredibly amateur now. I am disappointed that Ponting says 'everything else is secondary' presumably including the quality of the research.

 

[AndyPR]

Uhm... please clarify i don't see where i slipped? Foggy with a chance of rain here

You write paychiatrists when, presumably, meaning psychiatrists.

 

[Kati]

You write paychiatrists when, presumably, meaning psychiatrists.

I will leave it just like that

 

[Large Donner]

I am disappointed that Ponting says 'everything else is secondary' presumably including the quality of the research.

Yes how shocking that he chooses not to comment on the "fake science" speech and "harassment claims" from Crawley which are nothing more than people employing the scientific method to challenge her claims and proving her claims to be fraudulent.

It seems that real scientific proof and dialogue is now secondary to everything but spin and PR to protect ones own interests. Soundbites like "multidisciplinary" are the order of the day, I have been seeing that phrase used over the last decade in many areas of public life, education and health. It basically means status quo control, and an almost Orwellian, in house of everything that the public must know, think and how they think it.

That's why Mindfulness is now being taught to children in schools from the age of 5 onwards, with zero critical thinking or resistance from the teachers, the governors and the heads.

 

[lilpink]

it was so obvious what the CMRC was intended for when it formed in 2013 that I cannot believe the CMRC charities were so naive and must conclude they were complicit.

completely endorse this notion.

 

[lilpink]

It was so clear that CMRC was a scam. Why did the other charities go along with it is the question?

Seems to have an awful lot to do with 'tents'. Never been that enamoured with tents personally.. this is probably my least favourite of all.

 

[lilpink]

https://twitter.com/i/web/status/864090938087530497

https://twitter.com/i/web/status/864128009024000000

Secondary? Seriously? I think I'm almost as livid by that lack of understanding as I am by the moronic reply of Holgate ...

 

[lilpink]

MEGA is definitely not BPS. If you look at their website you will see that they say it is a biological study and that "the MEGA consortium has brought together many experts from a wide range of different disciplines across genetics, genomics, metabolomics, pain research, proteomics, psychiatry, sleep research and transcriptomics." I think it has huge potential to help M.E. patients.

Completely disagree and remind others of: https://www.change.org/p/opposing-m...autopublish&utm_term=des-lg-no_src-reason_msg

 

[Binkie4]

Could I ask in case I've missed it but has MEA and/or@charles shepherd expressed an opinion today about how MEA within CMRC should respond to Prof Holgate's letter to David Tuller?

ED:This is becoming quite crucial I think.

 

[JaimeS]

I get the impression that a lot of people working in UK medical research really do think of peer-review as a vaguely magical process that absolves them of responsibility for looking at the evidence.

THIS.

Under the umbrella term “CFS/ME”, so often used to mean Chronic Fatigue (CF), leading to the mistreatment of people with ME

Let's be real. It's used to mistreat people with the symptom 'chronic fatigue', too!

If you look at their website you will see that they say it is a biological study and that "the MEGA consortium has brought together many experts from a wide range of different disciplines across genetics, genomics, metabolomics, pain research, proteomics, psychiatry, sleep research and transcriptomics." I think it has huge potential to help M.E. patients.

I agree that genetics has an enormous potential to help, in the right hands. However, check out who's in charge? The usual suspects. Last I checked, Crawley was trying to associate ME with 'criminality'. Wonder to whom our genetics will be compared?

You've made the same comment elsewhere. If anything should tell us that who's in charge matters, it's PACEgate.

have not demonstrated capacity (or willingness) to discriminate fatigued patients from ME patients.

As I recall we asked if patients could at least be tagged regarding which criteria they met. There was a lot of waffling in response. Unless someone can point me to better data? This is from memory.

-J