AndyPR
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Lol, so they are admitting that researchers previously haven't had success with their studies!
UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016
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Large Donner
Senior Member
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One clue to this is the term "broad criteria" instead of the option to use multiple criteria and subgroup which is what they claim to be trying to achieve via their results.
Broad criteria means one criteria, probably oxford or oxford like then unveil your results as showing nothing except maybe a small range of deconditioning, "depression markers" etc differentials etc then retrospectively apply all your findings to all ME patients including the severely affected (none of which will be included in the "broad criteria") in an orchestrated media campaign as they did with PACE.
Its a big clue that they are not sub grouping using different criteria including the like of CCC and ICC etc FIRST.
They have no desire to use oxford criteria as a comparison group to other neuro immune criteria.
Oxford explicitly filters out people with neurological symptoms.
I think they need to have Peter Whites response to Malcolm Hooper, over the PACE ME cohort put to them when he had to admit...
We need to ask them if the above White statement will fit their "broad criteria" proclamations.
Sub grouping results, conclusions and "tailored treatments" for an oxford cohort is their "biomedical" ploy.
Broad criteria means one criteria, probably oxford or oxford like then unveil your results as showing nothing except maybe a small range of deconditioning, "depression markers" etc differentials etc then retrospectively apply all your findings to all ME patients including the severely affected (none of which will be included in the "broad criteria") in an orchestrated media campaign as they did with PACE.
Its a big clue that they are not sub grouping using different criteria including the like of CCC and ICC etc FIRST.
They have no desire to use oxford criteria as a comparison group to other neuro immune criteria.
Oxford explicitly filters out people with neurological symptoms.
I think they need to have Peter Whites response to Malcolm Hooper, over the PACE ME cohort put to them when he had to admit...
We need to ask them if the above White statement will fit their "broad criteria" proclamations.
Sub grouping results, conclusions and "tailored treatments" for an oxford cohort is their "biomedical" ploy.
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I think the MRC segment was very much a 'blame the victim' exercise. Unedifying to watch. The ICO tribunal decision was very disparaging of the 'harassment' claims, but weeks later they are still raked up.
There is a curious phenomenon at play with the harassment claims.
Those researchers who might genuinely claim to be harassed have no difficulty in displaying their fortitude by continuing to submit grant applications and receive funding. Yet this is supposed to put off the researchers whom we might wish to support and who have no reason to suppose that they would be harassed.
Perhaps they are all of little resilience compared to the stalwarts of the BPS school.
Those researchers who might genuinely claim to be harassed have no difficulty in displaying their fortitude by continuing to submit grant applications and receive funding. Yet this is supposed to put off the researchers whom we might wish to support and who have no reason to suppose that they would be harassed.
Perhaps they are all of little resilience compared to the stalwarts of the BPS school.
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Prof Jones is an immunologist treating patients with the liver disease PBC. Symptoms include fatigue, sleep disturbance, cognitive disturbance and ANS dysfunction. Prof Jones described the lessons learnt from research into the disease. Name changed by patient power. Importance of listening to patients and getting medical students interested. Developed a QOL measure used in 95% of PBC studies. Single universally used measure in research is critical. Importance of large cohort studies, can then subgroup/stratify. In PBC not simple connection between disease and symptoms. Need to think carefully about the disease model.
Do different types of science to understand the disease, fMRI studies showed PBC patients with fatigue had muscles which were slow to recover. Is trial underway into Rituxumab to treat fatigue in PBC. May need to use drugs at earlier stage in disease to be effective. Can fatigue be treated generically? Is done in PBC have to get industry interested.
Importance of good trial design. 'Beliefs' of some doctors treating patients with PBC will be familiar to those with #MEcfs. MRC have funded work into PBC fatigue. Is possible to transform the lives of patients. Very interesting.
Cinders66
Senior Member
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But no useful counter narrative put forward. I'm pleased Sue Waddle stepped in and said we don't hear of this but the MRC threw open to the audience to discuss why CFS wasn't attracting researchers and it was left to Hugh Parry to offer the establishment defence. Why didn't MERUK, AFME, MEA (all there etc) say well the CFS narrative 20 years in the media has over hyped GET and a lot of what drs are being taught in modules, through journals or at uni etc isn't getting across that this is a serious biomedical illness. PACE trial results and how they've been reported has distorted how the illness is viewed. The CFS name and weak U.K. Criteria, so it's essentially all viewed as chronic fatigue plus maybe aches and pains etc, isn't going to attract someone serious in to study CFS neuroscience nor is the fact that the severe, as far as I Know, aren't included in the BMj training courses or the peter white written medical text books. Oh and the fact Rona Morris tells the world GET is an effective treatment and Suzanne o Sullivan's book won wellcome award with its CFS is psychosomatic chapter hardly got drs beavering away a CFS spinal fluid tap and immunity study application did it? This could all have been said.
worldbackwards
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As ME sufferers, how could we possibly understand such grace under pressure.
Glycon
World's Most Dangerous Hand Puppet
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AndyPR
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ME Research UK have posted this on their Facebook page today
https://www.facebook.com/MEResearchUK/posts/1290190381026216:0
No comment from AfME on the subject yet though......
https://www.facebook.com/MEResearchUK/posts/1290190381026216:0
No comment from AfME on the subject yet though......
Large Donner
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Are the ME association yet to comment on the MEGA project, the inclusion of Peter White, Esther Crawley and others and the "broad criteria" issue?
Are they bound by the terms of the CMRC group agreement not to "criticize other researchers" which they had to sign up to in terms of addressing the obvious concerns of such matter?
Are they bound by the terms of the CMRC group agreement not to "criticize other researchers" which they had to sign up to in terms of addressing the obvious concerns of such matter?
AndyPR
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This is all they have commented so far, in answer to me pointing out White and Crawley were on board. Disappointed at the moment but also aware we haven't heard from Charles Shepherd.
worldbackwards
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Not avoiding the issue then.
Research 1st
Severe ME, POTS & MCAS.
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2015 Conference and previously:
UK's Dr Esther Crawley is handsomely praised an an excellent researcher by Stephen Holgate who ever so thoughtfully remembered to invite Professor Simon Wessely to suggest researchers for the UK ME CFS Research Collaborative not long ago, an excellent and professional idea, when Simon himself is on record referring to ME as a ''Myth''. I am pleased Stephen did this, and I am sure in other areas of medicine people who deny a disease exists, are also invited to help steer research in that disease also. So that's solid ground to start on and on the historical record of 'CFS/ME'' management under the auspices of the MRC.
2016 Conference:
As things are looking so positive for the MRC now PACE has been shown to be scientifically fraudulent by researchers worldwide including statiticians, lets begin with the excellent Scientific research of Esther Crawley (from the UK ME CFS Research Collaborative) on children that doesn't follow the same idea as PACE at all (phew!) .
Unlike in the PACE trial idea of CBT GET what happens in her model is the patients, usually after a virus, become sick, allegedly think there is something keeping them ill, so are fearful of activity,so they do less. By doing less, they get symptoms such as tiredness and sore muscles. If you do more, (via CBT) you will get less symptoms, and then you get better as there was no organic disease ever there! That is incredible, why didn't we think of this 30 years ago? No wonder the MRC want to fund more of this and AFME and AYME support them. Brilliant stuff, this autoimmunity rubbish is surely not worth giving £5 million to in equal measure, which is why it wasn't granted. That's totally normal to have autoantibodies to Muscaranic Acetylcholine receptors affecting your CNS and Adrenergic receptors (all over your body) too - that wouldn't explain Fatigue or any other symptoms such as autonomic dysfunction. No doubt CBT will reverse that along with bringing patients back from the dead with Mycocarditis induced Myocardial Infarction. Patients like Casey Fero, age 23, who didn't respond to CBT GET, but died of CFS instead:
I hope no one's got a retrovirus.
Anyway, we learn today that children whom Dr Crawley presumably sees, apparently these kids ''want GET''. This is good to hear as then they can play video games or chat on Skype for 'remote therapy' as a form of cutting edge treatment one day, but I wonder, do these children have ME (the 'Myth' Simon Wessely refers to, which is also a World Health Organisation disease state (ICD:10, G93.3) or instead, do the children who ''want GET'' actually not have the disease ME, but the F48.0 psychiatric PACE criteria Chronic Fatigue state? We do know right?
It's important to delineate between the two (Psych CF and ME), when children's parents may start worrying what to do, if their child relapses on GET and becomes paralyzed (child welfare issue for UK social services if a child is harmed at the hands of an adult) after all there is an antidote to GET in paralysed patients, right? Yes, more GET. Now for sure, they might not relapse from GET if the children hasn't got ME, but F48.0 PACE criteria (more likely to be functional somatizers). So it's important for a human rights reason, to make sure. We do know who is who, right?
Fortunately we have a test to avoid harming either child or adult patients, a screening tool, as it's a bit risky to recommend a therapy so many patients say makes them worse. What? We don't have a screening tool?
OK. So instead we make sure we use narrow criteria to make it more likely they do have ME? What? We use broad criteria to make it more likely they don't?! So we are diagnosing patients with an illness, with no test, using as broad criteria as possible and the MRC support this idea? Ok, that's good to learn. They are aware of the risks of this, but carry on regardless. Good to know, a superb idea to protect patients from therapeutic harms. Point noted historically.
But those who practice medicine will know the following:
If you exercise children with ME, who aren't functional somatic syndrome sufferers, who have blood tests to show they are suffering from inflammation (they were tested pre and post GET, right?) you will worsen their condition, that is without a doubt, as exercise in human beings increases inflammation in healthy individuals, never mind those with infections or inflammation.
Here's some Science doctors like to read (not BPS theory of CFS being explained by activity fear avoidance leading to de-conditioning) but Science..
So we have evidence in ME kids in this study above of:
+ Increased white blood cell death - apoptosis. For people who don't know, this is indicative of infection.
+ Increased Inflammation (Isoprostanes) an oxidative stress marker. Infection increases inflammation.
+Lowered Vitamin C (Antioxidant)
+Lowered Vitamin E (Antioxidant)
The above ELEVATED inflammation in pediatric CFS is BEFORE GRADED EXERCISE.
Which means if Esther's CF (said to be ''CFS/ME'' whatever that means) cohorts 'want GET', we need to know:
1) Did she measure the above inflammatory markers before or after GET in the children who ''want GET''?
What's that? She didn't do that? Ohh so we have no objective measures of a claim, so if there is no evidence, where are kids being told to engage with GET ? That sounds fine to me, solid Science, because no objective, only subjective outcomes are available (those of the researcher and coerced child - coerced by the therapist via CBT).
I guess the parents signed the consent form for increasing cell damage in their children, then it doesn't matter kids are potentially harmed by therapist operating under the GMC rules of being a doctor in the UK, or the NMC in outpatients clinics or on pediatric wards That's OK then, doesn't matter, doctors aren't meant to keep up to date on Science or medicine in the UK.
The MRC is a truly wonderful organisation for ME CFS. First in collaboration with the DWP and DOH they enable PACE and now they enable potentially disabling children. (GET makes inflammation worse), and pediatric class PWME have elevated inflammation as well as their adult counterparts:
Indeed the severely affected subset, in the 25% ME group charity, when polled, 95% said GET made them worse.
This confuses me on a matter of human rights.
Would we define broad criteria chronic fatigue as ''CFS/MS''? And if we did, would it be legal, never mind ethical in adults never mind kids to then recommend GET for Multiple Sclerosis to overcome an alleged fear of exercise? (No research supports this).
I guess my concerns are invalid and we can rest assured we are in safe hands. (I was worried for a minute there no one actually knows what they're doing).
UK's Dr Esther Crawley is handsomely praised an an excellent researcher by Stephen Holgate who ever so thoughtfully remembered to invite Professor Simon Wessely to suggest researchers for the UK ME CFS Research Collaborative not long ago, an excellent and professional idea, when Simon himself is on record referring to ME as a ''Myth''. I am pleased Stephen did this, and I am sure in other areas of medicine people who deny a disease exists, are also invited to help steer research in that disease also. So that's solid ground to start on and on the historical record of 'CFS/ME'' management under the auspices of the MRC.
2016 Conference:
As things are looking so positive for the MRC now PACE has been shown to be scientifically fraudulent by researchers worldwide including statiticians, lets begin with the excellent Scientific research of Esther Crawley (from the UK ME CFS Research Collaborative) on children that doesn't follow the same idea as PACE at all (phew!) .
Unlike in the PACE trial idea of CBT GET what happens in her model is the patients, usually after a virus, become sick, allegedly think there is something keeping them ill, so are fearful of activity,so they do less. By doing less, they get symptoms such as tiredness and sore muscles. If you do more, (via CBT) you will get less symptoms, and then you get better as there was no organic disease ever there! That is incredible, why didn't we think of this 30 years ago? No wonder the MRC want to fund more of this and AFME and AYME support them. Brilliant stuff, this autoimmunity rubbish is surely not worth giving £5 million to in equal measure, which is why it wasn't granted. That's totally normal to have autoantibodies to Muscaranic Acetylcholine receptors affecting your CNS and Adrenergic receptors (all over your body) too - that wouldn't explain Fatigue or any other symptoms such as autonomic dysfunction. No doubt CBT will reverse that along with bringing patients back from the dead with Mycocarditis induced Myocardial Infarction. Patients like Casey Fero, age 23, who didn't respond to CBT GET, but died of CFS instead:
Or other patients who died of complications from heart damage, like Alison Hunter age 19
So young people are dying of ME CFS from cardiac damage, and EXERCISE is the nominated therapeutic intervention WITHOUT SCREENING TESTS FOR CARDIAC HEALTH/INFLAMMATION PRIOR TO GET THERAPY. Sounds safe. I'm sure the MRC knows what they're doing after all they are aware the UK blood supply has been protected since the late 1980's and in the 1990's CFS was added to ban on blood donation alongside PVFS and ME. They do know this, right? And the patients were told this at each conference, right? Otherwise they might go donate after CBT, and infect other people with the illness belief of ME. Very unsafe, these transmittable ''beliefs'' in a virus - hence the importance to spend £5 million of tax payers money.
I hope no one's got a retrovirus.
Anyway, we learn today that children whom Dr Crawley presumably sees, apparently these kids ''want GET''. This is good to hear as then they can play video games or chat on Skype for 'remote therapy' as a form of cutting edge treatment one day, but I wonder, do these children have ME (the 'Myth' Simon Wessely refers to, which is also a World Health Organisation disease state (ICD:10, G93.3) or instead, do the children who ''want GET'' actually not have the disease ME, but the F48.0 psychiatric PACE criteria Chronic Fatigue state? We do know right?
It's important to delineate between the two (Psych CF and ME), when children's parents may start worrying what to do, if their child relapses on GET and becomes paralyzed (child welfare issue for UK social services if a child is harmed at the hands of an adult) after all there is an antidote to GET in paralysed patients, right? Yes, more GET. Now for sure, they might not relapse from GET if the children hasn't got ME, but F48.0 PACE criteria (more likely to be functional somatizers). So it's important for a human rights reason, to make sure. We do know who is who, right?
Fortunately we have a test to avoid harming either child or adult patients, a screening tool, as it's a bit risky to recommend a therapy so many patients say makes them worse. What? We don't have a screening tool?
OK. So instead we make sure we use narrow criteria to make it more likely they do have ME? What? We use broad criteria to make it more likely they don't?! So we are diagnosing patients with an illness, with no test, using as broad criteria as possible and the MRC support this idea? Ok, that's good to learn. They are aware of the risks of this, but carry on regardless. Good to know, a superb idea to protect patients from therapeutic harms. Point noted historically.
But those who practice medicine will know the following:
If you exercise children with ME, who aren't functional somatic syndrome sufferers, who have blood tests to show they are suffering from inflammation (they were tested pre and post GET, right?) you will worsen their condition, that is without a doubt, as exercise in human beings increases inflammation in healthy individuals, never mind those with infections or inflammation.
Here's some Science doctors like to read (not BPS theory of CFS being explained by activity fear avoidance leading to de-conditioning) but Science..
So we have evidence in ME kids in this study above of:
+ Increased white blood cell death - apoptosis. For people who don't know, this is indicative of infection.
+ Increased Inflammation (Isoprostanes) an oxidative stress marker. Infection increases inflammation.
+Lowered Vitamin C (Antioxidant)
+Lowered Vitamin E (Antioxidant)
The above ELEVATED inflammation in pediatric CFS is BEFORE GRADED EXERCISE.
Which means if Esther's CF (said to be ''CFS/ME'' whatever that means) cohorts 'want GET', we need to know:
1) Did she measure the above inflammatory markers before or after GET in the children who ''want GET''?
What's that? She didn't do that? Ohh so we have no objective measures of a claim, so if there is no evidence, where are kids being told to engage with GET ? That sounds fine to me, solid Science, because no objective, only subjective outcomes are available (those of the researcher and coerced child - coerced by the therapist via CBT).
I guess the parents signed the consent form for increasing cell damage in their children, then it doesn't matter kids are potentially harmed by therapist operating under the GMC rules of being a doctor in the UK, or the NMC in outpatients clinics or on pediatric wards That's OK then, doesn't matter, doctors aren't meant to keep up to date on Science or medicine in the UK.
The MRC is a truly wonderful organisation for ME CFS. First in collaboration with the DWP and DOH they enable PACE and now they enable potentially disabling children. (GET makes inflammation worse), and pediatric class PWME have elevated inflammation as well as their adult counterparts:
So the MRC are having a conference where doctors are potentially disabling children as a therapy the kids (they) 'want', when we don't know who 'they' are, as we have no test and yet patients in the community with ME, report this can worsen then so badly, they never recover.
Indeed the severely affected subset, in the 25% ME group charity, when polled, 95% said GET made them worse.
Yet the MRC are funding research that reports (using no science) GET makes people better, by using broad fatigue criteria but still using the word ''ME'' in their ''CFS/ME'' - with no objective test to prove this claim by the researchers.
This confuses me on a matter of human rights.
Would we define broad criteria chronic fatigue as ''CFS/MS''? And if we did, would it be legal, never mind ethical in adults never mind kids to then recommend GET for Multiple Sclerosis to overcome an alleged fear of exercise? (No research supports this).
I guess my concerns are invalid and we can rest assured we are in safe hands. (I was worried for a minute there no one actually knows what they're doing).
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Glycon
World's Most Dangerous Hand Puppet
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I don't know whether you're aware of it, but George Engel (the originator of the "biopsychosocial model") produced studies like this:
The Role of Psychological Process in a Somatic Disorder: Multiple Sclerosis 1. The Emotional Setting of Illness Onset and Exacerbation
It is sometimes helpful to keep things in historical perspective...
There's been a similar study on AIDS from the 1980s referred to on this forum. History does indeed repeat itself.
CFS_for_19_years
Hoarder of biscuits
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I think Crawley's approach to pediatric MECFS makes it look like a walk in the park...."Look, they like GET." Maybe she hasn't seen these memorials.
From http://www.ncf-net.org/memorial.htm:
From http://www.ncf-net.org/memorial.htm:
Cinders66
Senior Member
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I think It's up to individuals if they support this or not but probably unrealistic to expect the CMRC with Crawley as deputy chair, which has been about broad churches, wide ranging opinions and wide criteria from the start, to bow to pressure on these issues.
U.K. CMRC Isn't yet going to suddenly move away from having GET proponents on board when its the national uk number 1 treatment still, in my opinion.
My own decision will be based more on how well is the project going to benefit those with ME (ICC/CC) or is it going to be a "this is your lot for a few years fatigue study" just with ME/CFS name and money. I suspect I won't be enamoured enough to sign the petition though.
U.K. CMRC Isn't yet going to suddenly move away from having GET proponents on board when its the national uk number 1 treatment still, in my opinion.
My own decision will be based more on how well is the project going to benefit those with ME (ICC/CC) or is it going to be a "this is your lot for a few years fatigue study" just with ME/CFS name and money. I suspect I won't be enamoured enough to sign the petition though.
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Cinders66
Senior Member
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Btw did anyone see anything specific to CFS in the sjogrens presentation? In the original proposal the small CFS component was supposed to be a study to see if what they found in the main sjogrens study was also found in CFS (after all fatigue could have many causes). Is that yet to be completed or was what they found not substantial enough to follow up in CFS? That study was £1/4 of our 2012 CFS MRC funding allocation ...