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

Messages
13,774
From discussion in another thread:

Holgate's letter has interesting wording. He seems to go out of his way to back Crawley but only by saying that her work is peer reviewed he doesn't seem to be able to bring himself to try to understand the criticisms or comment on them. I wonder if he is trying to leave himself room for deniability.

But it does suggest that the CMRC thinks good science is anything that gets past peer review.

They completey avoid addressing the concern raised by Tuller, and their defense of Crawley is entirely founded on processess rather than the deatils of her work or the claims she makes. It's exactly the sort of cowardly evasion of debate that has done so much to harm patients.

I could not respect anyone who agreed for that letter to be released. It's a disgrace, and makes it difficult to see how anyone could defend the CMRC at this point.
 

dangermouse

Senior Member
Messages
430
I am so disappointed. The response is another non response. No acknowledgement of the bad behaviour, it is silence, again, in the hope that it'll all be forgotten soon.

Even more disappointing is the silence from the charities, AfME isn't a surprise but I had higher hopes for the MEA.

I can't trust or have any faith in the CMRC.
 

user9876

Senior Member
Messages
4,556
From discussion in another thread:



They completey avoid addressing the concern raised by Tuller, and their defense of Crawley is entirely founded on processess rather than the deatils of her work or the claims she makes. It's exactly the sort of cowardly evasion of debate that has done so much to harm patients.

I could not respect anyone who agreed for that letter to be released. It's a disgrace, and makes it difficult to see how anyone could defend the CMRC at this point.

Bristol university put up a similar defense of one of the trials when people complained. What strikes me is that it is less than a glowing endorsement but rather suggests support for friends when they know that they don't deserve it.
 

Jo Best

Senior Member
Messages
1,032
The CMRC charities should be thoroughly ashamed of themselves because their members or supporters rely on their judgement as to what initiatives to trust and 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.
 

Yogi

Senior Member
Messages
1,132
David Tuller said "In other words, the CMRC has sent me its second “f**k off” message. Happy International ME Awareness Day!"

........DOES......



.........IT (CMRC)..........



........NEED.......



........TO........



...........BE.........



........ANY......



.........MORE........




.......CLEARER........



..........TO.........




........PEOPLE.....



......??????...........





 
Messages
13,774
Bristol university put up a similar defense of one of the trials when people complained. What strikes me is that it is less than a glowing endorsement but rather suggests support for friends when they know that they don't deserve it.

I'm not sure... I wonder if it partly reflects these peoples' genuine understanding of how 'science' should work: "If it got published in a peer-review journal, there's no reason to think critically about it".

This mentality seems absurd to us, but I think we read a quite narrow range of views from researchers/academics/etc. 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. It's like people who think that as 'science' is 'self-correcting' it is reasonable to have faith in it. That sort of mentality can make for an easy life, so that might encourage people to avoid thinking to seriously about the problems with it.
 
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2,125
STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC)
MAY 2013


The 25% ME Group is the only UK charity representing those who are severely affected with Myalgic Encephalomyelitis, a World Health Organization ( ICD10.9.3) classified disease, recognised by the UK Government as neurological. We subscribe to the use of the International Consensus Criteria (ICC) to clearly identify and separate ME from CFS, in order to ensure that ME is respected, treated and researched as a serious neurological disease impacting upon multiple systems of the body.

Therefore we cannot support nor validate the recently created CFS/ME Research Collaborative charter (CMRC) since, in our opinion it is an unacceptable waste of precious research funds, accommodating a range of research across a wide and vague criteria range not specific to ME. The CMRC, in our opinion, is more likely to prolong the current state of confusion rather than bring about much needed medical research or clarity.

Under the umbrella term “CFS/ME”, so often used to mean Chronic Fatigue (CF), leading to the mistreatment of people with ME; the CMRC does not and cannot represent or safeguard the needs of people with Severe ME.

It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for Myalgic Encephalomyelitis and for people with Myalgic Encephalomyelitis to be used for CF research.

Without the separation of ME from CFS and particularly Chronic Fatigue, the 25% ME Group fears there will continue to be misdiagnosis, misrepresentation and negation of Myalgic Encephalomyelitis alongside the inappropriate perpetuation of psychological therapies charading as treatment, that, as our research has shown, does great harm to our members.

The 25% ME Group supports the need for medical research, using specific criteria to safely identify Myalgic Encephalomyelitis, so that ME can be studied and identified accurately in research; this will not come about through, non ICC-based research into vague “CFS/ME”.

For these reasons, the 25% ME Group, along with other concerned ME charities (ie, Tymes Trust, IiME and Grace Charity for ME) wholeheartedly cannot support the CFS/ME Research Collaborative charter.

The 25% ME Group
www.25megroup.org
enquiry@25megroup.org

eta:
CHARITY No. SC034265
PATRON: Dr Byron Hyde MD
MEDICAL ADVISOR: Dr Nigel Speight
MA, MB,
B Chir, FRCP, FRCPCH, DCH
SCIENTIFIC ADVISORS: Dr Vance Spence PhD, Professor Malcolm Hooper PhD. B.Pharm. C.Chem. MRIC


The writing was on the wall .....
 
Last edited:

Mohawk1995

Senior Member
Messages
287
Just like the pain epidemic/opioid crisis in the US...If the people who treat these disorders were so successful, then why all of the continued and apparently worsening issues and results? If an effective and consistent treatment existed it would be obvious.

For the issue of Pain, it would probably be better if medicine left it alone than to continue on "treating" it. Maybe for ME the same could be said not just the treatments that have been attempted and failed. At least until more effective treatments can be found. Not advocating stopping research and seeking treatment, but we really need to look at the problem globally and honestly ask the question are there things we are doing that are actually making it worse?
 
Messages
2,087
Personal view: Need to focus on the cross-disciplinary science that people with CFS/ME desperately need. All else is secondary. End of.


This is exactly the party line isn't it, ....cross disciplinary science that people with CFS ME desperately need.

No we dont desperately need any cross disciplinary science. We desperately need good quality biomedical science. End Of.