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UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

Large Donner

Senior Member
Messages
866
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...

In their letter, Peter White et al state: “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME”.



The sentence continues by stating that the PACE Trial studied: “CFS defined simply as a principal complaint of fatigue that is disabling, having lasted six months, with no alternative medical explanation (Oxford criteria).

http://www.investinme.org/Article42...oper to undated letter by White to Horton.htm

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.
 

Chrisb

Senior Member
Messages
1,051
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.
 
Messages
86
Location
East of England
I see that Professor David Jones is giving the Anne Faulkner memorial lecture at 3:30 pm.

Any indication of what it will be about?

Who is he? I don't think I'm familiar with the name. Is he this bioinformatics guy?

http://www0.cs.ucl.ac.uk/staff/D.Jones/
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
Messages
494
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.

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

Senior Member
Messages
2,051
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.
As ME sufferers, how could we possibly understand such grace under pressure.
 
ME Research UK have posted this on their Facebook page today

The Times and harassment

The Times yesterday had an informative piece about ME/CFS, which also mentioned the issue of harassment of researchers and alluded to bitterness and confrontation (read more http://bit.ly/2cEKS5w). The issue was also raised today at the 3rd UK CMRC conference in Newcastle, so we thought we’ve give ME Research UK’s perspective on the matter – which can be stated very simply.

Our charity has been funding biomedical research studies for 16 years, and has supported financially more than 40 individual projects in the UK and overseas (see an overview http://bit.ly/1mNZkvM). In that time, none of our grantholder–researchers has complained to us of campaigns of harassment, whether from patients or anyone else. No doubt robust individual exchanges of views have occurred from time to time, but these are part of the terrain when people feel passionately about an issue; they may even be welcome as a valuable addition to the scientific debate.

The photo shows our Chairman Dr Vance Spence at the conference today with researchers we have funded, none of whom seems harassed. They are (L to R) Prof Julia Newton (Newcastle), Dr Vance Spence, Dr Sarah Knight (Australia), Victoria Strassheim (Newcastle), Dr Clive Carter (Leicester) and Prof David Patrick (Canada), and details of their projects can be found on our website.

https://www.facebook.com/MEResearchUK/posts/1290190381026216:0

No comment from AfME on the subject yet though......
 

Large Donner

Senior Member
Messages
866
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?
 
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.
Screen Shot 2016-09-29 at 21.26.34.png
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
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:
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..

Children with CFS/ME had increased oxidative stress compared with control individuals (isoprostanes: 252.30 vs 215.60 pg/mL, P = .007; vitamin C, mean [SD]: 0.84 [0.26] vs 1.15 [0.28] mg/dL, P < .001; vitamin E, 8.72 [2.39] vs 10.94 [3.46] microg/mL, P = .01) and increased white blood cell apoptosis (neutrophils: 53.7% vs 35.7%, P = .005; lymphocytes: 40.1% vs 24.6%, P = .009).

Source:
Arch Pediatr Adolesc Med. 2010 Sep;164(9):817-23. doi: 10.1001/archpediatrics.2010.157.
Biochemical and vascular aspects of pediatric chronic fatigue syndrome.
Kennedy G1, Khan F, Hill A, Underwood C, Belch JJ.

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:
Source:
Source: Free Radic Biol Med. 2005 Sep 1;39(5):584-9.
Oxidative stress levels are raised in chronic fatigue syndrome and are associated with clinical symptoms.
Kennedy G1, Spence VA, McLaren M, Hill A, Underwood C, Belch JJ.
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.
Source:
UK charity - The 25% Severe ME group
Severely Affected and Graded Exercise Survey
2004
http://www.25megroup.org/Information/Group Publications/Group reports/March 2004 Severe ME Analysis Report.doc
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
Messages
299
Location
ON, Canada
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).

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
In 32 patients from the United States and Israel with multiple sclerosis the role of psychological processes was examined in relationship to the transitional period between health and the onset of disease. In 28 of these patients the emergence of symptoms ultimately diagnosed as those of the demyelinating disorder occurred in conjunction with a psychologically stressful situation. The corresponding intra-psychic state was characterized by difficulty in coping and feelings of helplessness. In spite of cultural differences among the patients there was an impressive similarity in these psychological processes. Illustrative case material is presented.

It is sometimes helpful to keep things in historical perspective...
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
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:
Anonymous, 19 year-old female. Died 1986. Cause of death: severe, progressive ME. (Source: letter from family member.)

Jason L. Brekenridge, 23, died on December 16th, 2005 in Baldwinsville, NY. An autopsy found he died of a seizure. Jason was disabled with CFIDS/ME shortly after receiving two associate degrees in technology and business management from Bryant & Stratton College. He had to move in with his parents...

Daniel Chang-Bard, 21, died in the spring of 2012. He got sick while a student at McGill University and when he was preparing to go to Peru to volunteer at an orphanage along with some fellow students. He had four vaccines that were the trigger to allow CFIDS/ME to take over his life for the next three years.

Emily Louise Chapman, died in February 2006, age 20. She had been diagnosed with CFS at age 13, and in the last year of her life, she developed chronic pancreatitis; before her illness she excelled in sport, academic work and creative arts. Emily’s deteriorating health was exacerbated by the relentless hospital programs over 15 months and medical abuse.

Rebecca Grace Childs, 23, died of respiratory complications of CDIDS/ME on April 27th, 2010, after a courageous fight with it since she was a young child.

Sophie Coldwell, 17, died of leukemia less than two weeks after doctors at a walk-in clinic in England sent her home saying she was just tired and had tonsillitis and gingivitis. She had already been diagnosed with “CFS” weeks earlier..

Skye Dailor, 14 year-old female. Died September 1st, 1990. Cause of death: heart attack caused by lethal dose of pills following taunts by classmates. Her physician, David S. Bell, M.D., FAAP, dedicated his first book in her memory.

Casey Ryan Fero, died on July 4th, 2005 in his sleep at age 23. An autopsy showed he died of myocarditis, a viral infection of the heart muscle. Casey had CFIDS/ME since the age of nine.

Jenny Hill, died in April, 2007, at age 24 in Australia. According to The Sydney Morning Herald, "A bout of flu progressed into headaches and exceptional tiredness, and by the next year, with no resolution in sight, she was referred to a psychiatrist. Three years later a leading immunologist still thought she was having trouble re-entering normal life after being knocked around by a virus. He prescribed gradually increasing exercise....

Matthew Hodding, 20, took his own life in 2006 after suffering acutely with CFIDS/ME for over half his short life. His father told the coroner's office that his son believed in reincarnation and he "was seeking a new life. Matthew suffered from extreme pain in addition to numerous other symptoms and social isolation.

Alison Hunter, struggled with many years as a child with CFIDS/ME in Australia. She died at age 19 of complications of the disease. A foundation was named in her memory.

Glenn Marcus, male in early 20s, 1994. Cause: Unknown. Autopsy showed stomach seemingly exploded with bits found throughout body. Died in his sleep while attending college part-time in California. A Massachusetts resident, he had CFIDS/ME since a young teen.

Tara Morgan, 20, died in September of 2011. When her brothers called to her and got no response, they found her not breathing in her room in Letchworth (UK). Ambulance medics were unable to revive her. The inquest noted that she "had a history of being unwell for some time" and that her immune system "had been unwell for some time". They felt her death was due to a "dysfunctional immune system" and said it could have something to do with "her chronic fatigue syndrome"....

Guy Ramsey, 18, died by his own hand in July of 2009. A victim of CFIDS/ME, Guy got sick at age 12 and often had to miss school. He tried multiple remedies including light therapy and acupuncture but saw little or no help.

Matthew Brandon Sooy, died in April of 1997 at the tender age of 17. When he was just 3, Matthew was diagnosed with asthma which the physicians did not understand was the beginning of CFIDS/ME. He was twelve before he was diagnosed correctly.

Victoria Webster, 17, died of ME in September of 2011. She had the disease since she was a baby although it was not correctly diagnosed until she was 13 years old. Victoria suffered severely with ME while her family found themselves battling various agencies.
 

Cinders66

Senior Member
Messages
494
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.
 
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Cinders66

Senior Member
Messages
494
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 ...