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

[Dx Revision Watch]

This is a terrific resource. Thanks so much for posting it.

Please note that this is from SEVEN YEARS AGO - obviously the MRC rejected their application. Now I understand why MEGA applied to Wellcome instead of starting with an MRC grant.

It is astounding to think that Crawley believes the puzzle of ME can be solved by having tired people spit into a cup and fill out questionnaires.

You're welcome, @jimells

 

[Dx Revision Watch]

A bit more of the transcript for the section that jimells has highlighted:

Extract from transcript at:

https://meagenda.wordpress.com/2010...presentation-the-future-of-research-in-cfsme/

Now, the thing… so the reason why we do it is this bit here. What we’re interested in doing is finding risk factors that we can change. So that’s either going to be drug treatments or other risk factors that we can change. So, for example, if we found a gene that meant you were exquisitely sensitive to the Epstein Barr virus we might actually look at treatments to help you react better to it or something like that. So it’s all about therapeutic targets and risk factors.

Slide 30: Large size

• 2000 to 5000 for first study
• 2000 to 5000 for replication study

• UK – only place in the world where this can be done

The problem with the genome-wide association study is that you need at least 4,000 patients for your first study and 4,000 controls to show that you’ve got it right and you need 16,000 … sorry, 4,000 patients the first, 4,000 for the second and 16,000 controls for each.

Where in the world do you think we can do a genome-wide association study? [Ed: Waits for audience response] Here. Here. England is the only place in the whole world where we can do this type of study. Why? Because we set up a large collaborative of clinical centres and patients in clinical centres and patients want us to do this study. So, next time you go and see one of your clinicians, if we’re lucky with our funding, and we hope we will be, you may be asked to spit in a pot and, if you are asked to spit in a pot, please do, because this is how we’re going to tackle this problem.

The UK is the only place where the clinicians and researchers are working together and we are. We’ve put a grant into the MRC. It has all of the people working in research and genetic research, [they] have all got their names on the application to the MRC. “Please give us £2½ million so we can do this study.”​

 

[JaimeS]

Since the depression scales she prefers are the ones which conflate physical symptoms with mood disorders, she can guarantee that patients will score higher.

Yes, I remember reading through the questionnaire often used (SF-36, is it?) and there are a surprising number of queries about fatigue and physical debility. It's almost as though the designer believed that certain physical symptoms always indicate depression.

Oh, wait, I should probably remove that 'almost'.

Thanks for alerting us to this. Having only started exploring the murky world of ME research recently, I'm still catching up with the back story.

Aren't we all.

 

[Valentijn]

Yes, I remember reading through the questionnaire often used (SF-36, is it?) and there are a surprising number of queries about fatigue and physical debility.

Nah, HADS is the most common one. SF36 is pretty clear about delineating between emotional and physical limitations. Though the physical scale does have issues with scores not really reflecting a linear relationship with degree of disability.

 

[Wolfiness]

Dr Crawley used to work in our unit and was quite good at her job.

I'm trying to imagine how that might be. Do you mean she was in rheumatology?

 

[Jonathan Edwards]

I'm trying to imagine how that might be. Do you mean she was in rheumatology?

Yes, she trained as a paediatric rheumatologist at UCL. Her research was into the genetics behind the involvement of interleukin 6 in childhood arthritis.

 

[Daisymay]

Yes, she trained as a paediatric rheumatologist at UCL. Her research was into the genetics behind the involvement of interleukin 6 in childhood arthritis.

Hmmm, EC trained in scientific research at UCL, her subsequent "research" is not a good advert for UCL I'm afraid!

No offence to UCL I'm sure she was well trained.

 

[Yogi]

Further denigration by Crawley here as the CMRC supports her:

http://forums.phoenixrising.me/inde...-2017-a-day-with-the-mupp-ets-and-more.51518/

 

[Wolfiness]

I would like to ask @charles shepherd whether he still supports MEGA?

www.meassociation.org.uk/2016/10/give-this-mega-project-a-chance-to-fly-dont-try-to-strangle-it-at-birth-says-dr-charles-shepherd-3-october-2016/

So the numbers need to be huge and a study of this nature may also need to include people with chronic fatigue states whom we will then want to exclude for both our benefit and for their benefit.

In my opinion, getting this right will clearly be dependent on having very detailed clinical information accompanying the biological samples – as is the case with the ME/CFS Biobank where we can check what diagnostic criteria (and symptoms) accompanies each individual blood sample that has been collected and stored.

I am not yet clear as to how this will be done in this study, which Is why I asked the question on patient selection at the conference. The nearest information we have was the reply from Dr Esther Crawley in which she stated that patients will meet NHS diagnostic criteria for ME/CFS and will be recruited from the NHS hospital-based referral centres for people with ME/CFS

 

[lilpink]

I would like to ask @charles shepherd whether he still supports MEGA?

www.meassociation.org.uk/2016/10/give-this-mega-project-a-chance-to-fly-dont-try-to-strangle-it-at-birth-says-dr-charles-shepherd-3-october-2016/

I'd be curious too..

 

[Wolfiness]

I have been to an NHS fatigue clinic in about 2000. It was a yawning pit of hopelessness and ignorance with a well-meaning nurse who explained pacing to me with all the expertise of someone who'd learnt it from a decent weekend course.

I spoke to the consultant (not a psychiatrist) in 2014 and was told that "you can't increase your activity unless you increase your activity" and that the only reasons people end up tube fed are "severe emotional problems". I don't know how they would know that since they don't actually have any contact with severely ill people. I wouldn't trust their selections.

Give the money to the OMF instead. They are already "trying to sort out the different clinical and pathological sub-groups/ phenotypes that currently come under the very messy umbrella of ME/CFS, as well as those with unexplained chronic fatigue, AND in the process develop diagnostic biomarkers that could then be used as objective diagnostic tests to identify specific sub-groups of patients that come under this ME/CFS umbrella, ALONG WITH helping to identify specific forms of treatment that are aimed at these specific sub-groups". With bells on.

 

[JaimeS]

Yes, she trained as a paediatric rheumatologist at UCL. Her research was into the genetics behind the involvement of interleukin 6 in childhood arthritis.

What a shame... that sounds useful. Wish she'd go back to it, honestly.

 

[Valentijn]

What a shame... that sounds useful. Wish she'd go back to it, honestly.

Quackery is easier, more lucrative, and a faster way to get attention.

 

[JaimeS]

Quackery is easier, more lucrative, and a faster way to get attention.

 

[Barry53]

Quackery is easier, more lucrative, and a faster way to get attention.

Attention seeking does seem to feature.

 

[dangermouse]

Quackery is easier, more lucrative, and a faster way to get attention.

That (worryingly) seems to be the case.

 

[Dx Revision Watch]

Excellent news, today, from ME Research UK

http://www.meresearch.org.uk/news/me-research-uk-and-the-uk-mecfs-research-collaborative/

ME Research UK has taken the decision to withdraw its membership from the UK CFS/ME Research Collaborative with immediate effect.

ME Research UK exists to fund biomedical research into ME/CFS, to find its cause, to develop effective treatments and ultimately to discover a cure. In 17 years, it has funded 45 specific research projects in the UK and overseas, more than any other single organisation in the world outside the American continent. The decision to resign from the Collaborative was not taken lightly but reflects the Trustees’ wish to focus on the charity’s key aims. ME Research UK remains committed to drive increased interest and investment into biomedical ME/CFS research and looks forward to continuing to work constructively with organisations, charities, researchers and funders in the future.

 

[Esperanza]

@JaimeS as a follow up to my post yesterday, I suppose the real problem is the lack of patient trust arising from PACE, not anything that is intrinsic to the MEGA study itself.

MEGA plan on selecting patients based on the NICE NHS criteria, and all need to have PEM, which will be defined in agreement with the Patient Advisory Group and are also going to assess patients for meeting other research criteria such as Fukuda,CCC,ICC, which sounds very good as regards making sure that it is really M.E. sufferers whose data is analysed and establishing different subtypes. They also say they will consider using the DePaul Symptom Questionnaire designed by Dr. Jason.

If a concern of patients regarding MEGA is that it will inappropriately introduce psychological explanations , I don't think this is likely as M.E. patients with secondary depression will be diagnosed as such and presumably any biological markers of depression isolated from biological markers of M.E. In this regard it is actually not really clear to me why M.E. sufferers tend to have confidence in the Naviaux study on Metabolic features of CFS for example, and yet reject MEGA which could do much more than this. Naviaux's reference in the conclusion of his paper to depression and ptsd being "related medical disorders" to CFS, and his expanded CFS metabolomics study asking questions about childhood trauma don't seem to attract criticism at all, versus Professor Crawley's acknowledgement that we don't yet fully know what is going on in M.E.( e.g. in her New Scientist article last November she says "Some people say that because we haven’t worked out the biology, the illness must be psychological. This is an extraordinary conclusion: there are plenty of illnesses we don’t understand, but that doesn’t mean we dismiss them as psychological" and "Even more strange is the argument that because clinicians currently use behavioural approaches to treat it, we must secretly think it is psychological." Also sometimes there does seem to be a bit of misrepresentation of what Professor Crawley says going on online or taking things ou.t of context, not that I agree with everything she says, but I think it is unrealistic to expect that a mixed group of patients who probably have different subgroups of illness all should agree with everything an individual researcher says about their illness, when it is still so poorly understood in general.

Anyway between the number of high calibre researchers involved, the patient advisory group, patient scrutiny, the fact that they plan on having an external agency help with the data analysis and the fact that their findings would have to be replicated in other studies I can't see that there will be any real scope for unethical or unscientific behaviour.

Have you read the statements of two of the three PAG members who resigned?

https://spoonseeker.com/2017/03/24/4210/

https://spoonseeker.com/2017/04/04/my-perspective-on-the-mega-pag/

 

[Valerie Eliot Smith]

The answer is most probably that most people (myself included) do not have a solid grasp of what best practices look like in science. And even those who do, I would argue, need to maintain a critical attitude toward BP as they can (I presume) be flawed too. I suspect that there are even science literate people who don't have a solid grasp and/or critical view of Best Practices.

This is the type of discussion that would prove fruitful if laid out clearly and in basic terms so that the rest of us can have a better understanding of how science ought to work and be able to see more clearly why MEGA is not what it might first look like (apart from the non confidence in EC).
J Edwards has done this to an extent.

I also wouldn't mind having someone sharing an informed opinion on whether the confidentiality agreement could be enforced should someone wish to 'spill the beans' after the PAG dissolves. Perhaps @Valerie Eliot Smith ?

Sorry @Snowdrop - I only just saw this. It depends on the nature and wording of the agreement. It's not possible to comment without seeing a copy of it. It can be shown to a legal advisor without breaking the agreement as the parties are protected by legal professional privilege.

 

[Snowdrop]

@Valerie Eliot Smith

Thanks for the response. As it stand at the moment I'd just settle for hearing something from the PAG as to what's happening even if it's not 'spilling the beans'.