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

[Large Donner]

No. I am a long term severe M.E. sufferer, and I just think that the current situation is untenable for M.E. patients and that the best hope of changing it is the MEGA study. I don't expect one study to be perfect or resolve everything, but it could lead to major increases in understanding what is going on in M.E.

Ok thanks.

Did you see the second part of my previous post?...

Secondly, without commenting on MEGA and what it could or could not be are you aware of the numerous problems PWME have with Esther Crawley?

 

[Barry53]

I suppose the real problem is the lack of patient trust arising from PACE, not anything that is intrinsic to the MEGA study itself.

I can only speak for myself here. I was all set to sign in favour of MEGA some months back, thinking that on balance it would be good. But then EC put her foot in it one time too many, and convinced me that the constant conflations, manipulations and powerful influence rang too many bells with other people I have known in my life, and have learnt the importance of listening to my gut-feelings on. I would still consider supporting MEGA, or something akin to it, if EC were completely out of the picture, and I could feel reassured would not be lurking in the background still. But have absolutely no trust in the integrity of any project she has influence over. Sorry.

Other people will also have valid reasons why they think MEGA is intrinsically flawed, and may well be right. If it weren't for the reasons above, I would have given it a chance to try and prove them wrong.

 

[JaimeS]

MEGA plan on selecting patients based on the NICE NHS criteria

The NICE criteria are weak. We should consume them to make way for stronger criteria.

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.

Can you provide a quote please? This might be from the Q&A but it's still good to have everything in the same place. If this is the case, it does not match what was being said previously. Which is not, in and of itself, a criticism -- if it has shifted, it means they were listening, which is great. However, I would not be surprised if it ended up shifting back because that was too tough to do, or funding ran low, or what-have-you. Again, past being prologue.

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.

This displays so much faith. What incentive do they have to differentiate between primary and secondary depression beyond 'good science' -- an abstract concept that hasn't seemed to matter to these selfsame researchers in the past? How is it that they mean to differentiate between the two?

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.

It's been stated quite clearly in response to many of your comments. I can see you disagree, but that doesn't mean no one has explained why, or that their reasoning is nonsensical. The researchers involved in MEGA have a poor track record. We have no reason to trust that their research will be even of middling quality. We have good reason to suspect the conclusions they draw will cause harm to patients. The point others have made here -- that the exact same reassurances were posted pre-PACE -- should be sobering.

Ignoring the past and hoping for the best is no key to successful anything.

his expanded CFS metabolomics study asking questions about childhood trauma don't seem to attract criticism at all, versus Professor Crawley

Again, you should be searching PR. Those comments were noted and people responded unfavorably to them. However, there is a significant difference in reaction. This, too, was already discussed however: it is not so much that patients as a group reject the idea of studying psychology on the whole. It's that Crawley is inherently untrustworthy. Did you look at her most recent presentation on patients at all? Would you agree with the broad, sweeping statements she made about patients even though she has no peer-reviewed literature that supports her libelous statements?

Don't add that she's the bitter pill we must swallow in order to earn good science. There is something deeply, intrinsically wrong there. We deserve good science with or without her; and we are unlikely to get good science with her involvement.

we must secretly think it is psychological.

Crawley's views are not a 'secret': she has stated them overtly on multiple occasions, she just supposes people won't check her quotes! Posters tend to cite here on Phoenix Rising, so you can find a heap of evidence that Crawley not only says ME/CFS is psychological, but that she links ME/CFS with as many unsavory psych diagnoses as she can juggle. She says different things to different audiences: the more hidden from patients she believes her statements are, the more openly vicious she becomes.

Unless her view has done a total 180 between last November and a week ago, that is. Unlikely.

are you involved in the the planning of MEGA in anyway?

Secondly, without commenting on MEGA and what it could or could not be are you aware of the numerous problems PWME have with Esther Crawley?

She is a patient, but does seem very attached to MEGA and tends to show up here only to make comments about it IMO. Which is certainly allowed.

I can only speak for myself here. I was all set to sign in favour of MEGA some months back, thinking that on balance it would be good. But then EC put her foot in it one time too many, and convinced me that the constant conflations, manipulations and powerful influence rang too many bells with other people I have known in my life, and have learnt the importance of listening to my gut-feelings on. I would still consider supporting MEGA, or something akin to it, if EC were completely out of the picture

Yep. On all counts. I resisted signing OMEGA for ages until this latest talk by E.C. Her most recently commentary was that poisonous. At this point, she is the third rail of ME/CFS research.

 

[JaimeS]

And may I say, that enough of a small group here on PR have commented that Naviaux's research was met with such uncritical praise while poor BPS has been so maligned that this is a narrative someplace.

Naviaux's paper was met with healthy criticism -- pages and pages of it here on PR.

As I pointed out the first time this point was mentioned, there is no obligation for any individual to treat a poor hypothesis with poor evidence in the same way as a decent hypothesis with preliminary evidence. This is a false equivalence argument with no merit. We are not required to treat every theory, no matter how malicious or ill-founded, no matter how 'spun' or poorly-supported, with the same degree of intellectual respect.

Naviaux had evidence. Naviaux did not go to conferences to blast patients. Naviaux's hypotheses were grounded in biology and not woo.

That is why he is taken more seriously, even though his work is not accepted unquestioningly, nor should it be.

 

[dangermouse]

And may I say, that enough of a small group here on PR have commented that Naviaux's research was met with such uncritical praise while poor BPS has been so maligned that this is a narrative someplace.

Naviaux's paper was met with healthy criticism -- pages and pages of it here on PR.

As I pointed out the first time this point was mentioned, there is no obligation for any individual to treat a poor hypothesis with poor evidence in the same way as a decent hypothesis with preliminary evidence. This is a false equivalence argument with no merit. We are not required to treat every theory, no matter how malicious or ill-founded, no matter how 'spun' or poorly-supported, with the same degree of intellectual respect.

Naviaux had evidence. Naviaux did not go to conferences to blast patients. Naviaux's hypotheses were grounded in biology and not woo.

That is why he is taken more seriously, even though his work is not accepted unquestioningly, nor should it be.

You articulate yourself very well and I agree.

 

[moosie]

I do hope you're right, but I'm worried they are not dead yet. I read in the minutes of the March meeting of the CMRC that they are now applying to the MRC (Medical Research Council).

I think I'm right that Stephen Holgate, chairman of CMRC and MEGA is on the MRC. Conflict of interest or what!!!! And they have an MRC observer at CMRC meetings. All very incestuous. I wouldn't be surprised if they get funding from there.

And if they do get funding, that will be all MRC funding for ME tied up in a nice neat bow for the next 10 years while they collect their 12000 data samples and Crawley merrily analyses the questionnaires to support her theories before any omics is ever done. And they're not including severely effected at this stage...

Christ.

 

[user9876]

. 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.

I think the difference is that Naviaux did a study rather than talking about the need to do one without really getting past that stage. To me the Naviaux study was interesting - I would describe it as a clue as to what to look at - it needs to be replicated and there are attempts to do this. But I like the approach of doing a small studies to get them done rather than planning one big mega study which could go all wrong if the wrong samples are collected. I would be much happier with Mega if they published a plan or did an initial pilot study to test their collection to results process and whether they get something interesting.

Crawley just isn't trusted because of her prior research and the way she acts as a doctor. I would describe her research as poor quality for example only using subjective measures in an open label trial or diagnosing everyone who is tired for a while as having ME then saying a lot of them are depressed. She is already running several trials and has yet to publish Smile results which should have been published sometime ago. However, there are some good people involved in MEGA so if they can get to actually doing some work rather than planning (or talking of planning) a mega trial then that would be good.

MEGA plan on selecting patients based on the NICE NHS criteria,

The NICE criteria are not developed for research and may well not be suitable for such. They are clinical criteria aimed at ensuring people get diagnosed rather than a more controlled set for research.

 

[Snowdrop]

The point others have made here -- that the exact same reassurances were posted pre-PACE -- should be sobering.

Fleshing this statement out by someone with the knowledge and information to hand would be very useful IMO. It would help to make very clear that MEGA is not so different from PACE. PACE having shown itself to be disingenuous and attempting to hide it's real aims.

As I pointed out the first time this point was mentioned, there is no obligation for any individual to treat a poor hypothesis with poor evidence in the same way as a decent hypothesis with preliminary evidence. This is a false equivalence argument with no merit. We are not required to treat every theory, no matter how malicious or ill-founded, no matter how 'spun' or poorly-supported, with the same degree of intellectual respect.

Couldn't triple like the post so reposted/quoted. Some people in an effort to be fair and reasonable tend to give too much of a chance to those who while they may seem to be wanting the same goal are not. This is where judgment comes in. Assessing the past deeds and holding the present actions/words up to scrutiny. This is not unfair -- it is prudent.

And yes even good science gets to sweat under the same spotlight.

 

[Wolfiness]

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."

Well, the whole physiology v psychology causation issue is a red herring or straw man. The real division in ME approaches is about treatment.

I experience a ceiling or budget of exercise capacity, which decreases when I breach it, which does not increase on its own and which I can't increase by any known rehabilitative method or effort or ruse. BPS believe this ceiling, biological or not, is alterable through psychological or behavioural rehabilitation.

Put simply, I think you can't do more until you get better, BPS think you can't get better until you can do more. These are not reconcilable views: either I can somehow do something to rehabilitate myself or I can't. Naviaux works with Ron Davis who knows I can't. Ergo I trust him.

For me the fallibility of MEGA comes from people looking at the wrong part of the elephant. Whatever tests they run, metabolomics schmetabolomics, they will be studying rehabilitatatable fatigue and not PEM. They may study PEM as a facet of lifestyle fatigue, for example.

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.

The point is *she* is making no effort to differentiate, understand or even acknowledge the subgroups.

Really @jodie100 a few years ago I was where you are but the more I learn, the more I come to realise that the militants of the Phoenix Massive are, well, right.

 

[JaimeS]

Whatever tests they run, metabolomics schmetabolomics, they will be studying rehabilitatatable fatigue and not PEM. They may study PEM as a facet of lifestyle fatigue

Well said.

Really @jodie100 a few years ago I was where you are but the more I learn, the more I come to realise that the militants represented by the Phoenix Massive are, well, right

Ha! Yeah, agreed. I generally try to take every side of an argument into account, and deliberate carefully. Here's the thing about this community: we have our sources. We back up what we say with links and direct quotations. And when you see a list of what proponents of the BPS school have said about patients -- when you see the materials they hand out to patients -- when you see videos and you hear them saying the quotations that have been attributed to them...

The presentation of facts mean you draw conclusions.

Those conclusions favor some researchers over others. Knowledge of the facts does not a bias make.

 

[Wolfiness]

And actually I believe my ME was precipitated by childhood trauma - just as autoimmune diseases can be. As long as nobody's saying the consequent neuroimmune damage can be undone by waving b0llocks at me I'm fine with that.

 

[JaimeS]

And actually I believe my ME was precipitated by childhood trauma - just as autoimmune diseases can be. As long as nobody's saying the consequent neuroimmune damage can be undone by waving b0llocks at me I'm fine with that.

I like your style.

 

[Wolfiness]





I may have a slight crush on you.

 

[jodie100]

Can you provide a quote please?

From Q. 9 in the MEGA Q & A http://www.megaresearch.me.uk/qanda/
"Patients with ME/CFS will be identified by clinicians in the NHS clinics which use NICE guidance to determine if patients have ME/CFS. This means patients with other causes of fatigue will not be recruited including, for example, those with thyroid disease, diabetes or depression that is sufficiently severe to explain their fatigue. Patients will have been examined, a full history taken and they will have had screening blood tests (to ensure other causes of fatigue have been excluded).We will collect sufficient information on each patient to be able to say whether they have ME/CFS using other research criteria, for example, the CDC [Fukuda 1994] diagnostic criteria, Canadian Consensus Criteria [2003], the International Consensus Criteria [2011] and so on. We will also consider other tools such as the De Paul Symptom Questionnaire for capturing data as well as samples. We will listen to our Patient Advisory Groups in terms of how much data we can collect on different diagnostic criteria. Our advisory groups may recommend collecting less data as patients are so ill."

Did you look at her most recent presentation on patients at all? Would you agree with the broad, sweeping statements she made about patients even though she has no peer-reviewed literature that supports her libelous statements?

I looked at the tweets from her presentation. Although I couldn't see the relevant graph in the tweet clearly enough to confirm I think it probably came from this study "Chronic Disabling Fatigue at age 13 and association with family adversity" http://pediatrics.aappublications.org/content/pediatrics/130/1/e71.full.pdf and was discussing the odds of developing chronic disabling fatigue in children based on the number of family adversity factors, so I just viewed it as discussing the scientific findings of one study and did not find it in any way offensive or view it as applicable to everyone with M.E.

@jodie100
Secondly, without commenting on MEGA and what it could or could not be are you aware of the numerous problems PWME have with Esther Crawley?

I think I am broadly aware of them, as I do read this forum quite often, I tend to view it as the problems mainly relate to her treatment recommendations rather than to her views on the causes of M.E., which is what MEGA would be studying. I find her epidemiological studies interesting.

Put simply, I think you can't do more until you get better, BPS think you can't get better until you can do more.

I totally agree with this, that most people cannot do more. Great summary .

And actually I believe my ME was precipitated by childhood trauma - just as autoimmune diseases can be. As long as nobody's saying the consequent neuroimmune damage can be undone by waving b0llocks at me I'm fine with that

Totally agree, I think childhood trauma could have contributed to my illness too, I don't particularly mind the behavioural aspects of recommended treatments such as sleep hygiene, ceasing boom-bust activity patterns or trying to gradually increase activity levels as much as safely possible, but ignoring the effects of activity on a patient or their activity ceiling or trying to blame their beliefs for their illness is disrespectful and harmful especially to people with trauma.


Anyway discussing it all with everybody on here has been very interesting and informative.

 

[Wolfiness]

I tend to view it as the problems mainly relate to her treatment recommendations rather than to her views on the causes of M.E., which is what MEGA would be studying.

I don't think they can be separated. I think what MEGA would be studying is this pet brainchild of hers best described as Rehabilitable Fatigue. What we need to be studying is the biological mechanism of exertion intolerance.

 

[JaimeS]

Although I couldn't see the relevant graph in the tweet clearly enough to confirm I think it probably came from this study "Chronic Disabling Fatigue at age 13 and association with family adversity" http://pediatrics.aappublications.org/content/pediatrics/130/1/e71.full.pdf and was discussing the odds of developing chronic disabling fatigue in children based on the number of family adversity factors, so I just viewed it as discussing the scientific findings of one study and did not find it in any way offensive or view it as applicable to everyone with M.E.

Context matters. This was in a talk discussing how to avoid FOI requests. It was juxtaposed against Tuller's blogs. It seems clear Crawley meant to correlate criminality with daring to question (cough!hercough!) research!

 

[Luther Blissett]

Many words can and have been written here about the merits/demerits of MEGA and the BPS crowd, but I think a lot of people have drawn conclusions about people involved based on this simplified time line:

• Pre-PACE trial - ethically and scientifically crap
• During PACE trial - ethically and scientifically crap
• Post-PACE trial - ethically and scientifically crap
• Pre-MEGA trial - ethically and scientifically crap

I predict at best that the pattern of behaviour will continue.

You can only punch someone in the face so many times while telling them that you are their best friend before they will decide that your words and actions do not match.

 

[Sean]

As I pointed out the first time this point was mentioned, there is no obligation for any individual to treat a poor hypothesis with poor evidence in the same way as a decent hypothesis with preliminary evidence. This is a false equivalence argument with no merit. We are not required to treat every theory, no matter how malicious or ill-founded, no matter how 'spun' or poorly-supported, with the same degree of intellectual respect.

To quote the old line: You don't want to be so open-minded that your brain falls out.

Really @jodie100 a few years ago I was where you are but the more I learn, the more I come to realise that the militants of the Phoenix Massive are, well, right.

Furthermore, given the circumstances, I would suggest that overall we patients have been models of restraint and fairness.

The BPS cult has well and truly earned the opprobrium and contempt they get, and if they keep behaving the way they have been then they will get more of it.

 

[Snow Leopard]

"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."

Crawley's colleagues have a long history of pushing their hypothesis that it is due to psychological factors. You can read all about it when they do a song and dance about "separating precipitating, and perpetuating factors*" and then go on to hypothesise that psychological factors are the perpetuating factors, despite a lack of good quality evidence to justify this claim. (or deconditioning, which is neither a specific, nor sensitive predictor of CFS)

*Esther Crawley has cited this study many times. (Note the aforementioned study is not by Wessley/White/Sharpe/Holgate, who have strong views as we all know).

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.

The members of the patient advisory group who feel they are being ignored to and some have stepped down as a result!?!

I wonder why those defending MEGA keep skirting around the fact that they're making no effort to utilise best practises in the field, particularly with regards to diagnostic criteria, outcome measures, biobank collaboration etc. The lack of collaboration in general is a problem across the field, so many research groups around the world don't seem to share. It's really disappointing.
As for "high calibre" researchers, who? I mean Esther Crawley still hasn't published the primary results of one of her studies many years after it has finished - this is hardly best practise by a high calibre scientist.


By the way, many of us were critical of the Naviaux study, particularly the strange claims about the "dauer" state. Some of us spent a lot of time trying to make sense of the findings in the context of other studies - we do not trust studies on their own!

 

[lilpink]

No.

I have previously written some of the reasons MEGA should not be supported, and they don't involve PACE (they do involve distrust of the biopsychosocial lobby though).

The OMEGA blog has lots of additional information gathered from last autumn when the OMEGA petition was first created: https://opposingmega.wordpress.com/