Ron Davis statement about NICE’s pausing publication of new guidelines

[Janet Dafoe]

Ron Davis Statement on NICE pausing new guidelines

NICE has abruptly paused the publication of it’s new guidelines for ME/CFS, arguing that those who are treating patients need to agree with the guidelines. This is a false argument. Medical advice must follow the evidence and not personal beliefs or political positions. If doctors treating ME/CFS patients do not agree with evidence based guidelines, they should not be treating these patients. This is why we have guidelines. When guidelines contain treatments that don’t work, or are harmful, then the guidelines should be rejected. We must have faith that the guidelines are in the best interest of the patient. NICE has completed their objective scientific review. It is a travesty that NICE is being influenced by people with vested interest in maintaining their beliefs in treatments that have long been shown to lack evidence supporting them and have been shown to be harmful to patients. If NICE does not stick to their mission of unbiased evidence based guidelines, then it will lose its credibility. It is time for the UK to join the rest of the scientific community and publish guidelines that are consistent with the evidence. Their influence is crucial, and every day that the old guidelines stand, physicians all over the world continue to recommend inappropriate and harmful treatment for ME/CFS patients.

 

[TiredBill]

Agree 100%.

Thank you Janet and Ron.

Bill

 

[seamyb]

"No more Mr NICE guy" - Ron.

 

[Woof!]

Amen.

 

[SWAlexander]

I wonder what their real MOTIVE is behind not accepting the guidelines.

 

[SWAlexander]

Just found this on Twitter:

It sounds like there is a motive, according to Dr. Keith Geraghty.
Some of his twitter postings: https://twitter.com/keithgeraghty

“How could @NICEComms appoint Prof Carol Black at the Chair of the roundtable to sort of the mess after some drs blocked dropping GET as a treatment for ME/CFS? Carol Black is a colleague of the PACE team lead Prof Peter White, where is COI screening and independence test here?”

“@NICEComms if the DWP part-funded the PACE trial, how could Carol Black a DWP advisor, who worked with Peter White, also a DWP advisor, be an ethical person to chair a roundtable debate on evidence generated from the PACE trial by Peter White? Ethics are important in science.”

“Indeed, it seems the round table will also be attended by Dr Miller who claims 1/3 of patients recover using CBT fully he opposes the new guideline, as does other attendee Prof Crawley, who also promotes CBT-GET. What kind of roundtable is this - I think it has lost credibility.”

“Articles online state that Prof Black proposed getting rid of "sick notes from your dcctor" - I've been researching disability reforms and this was proposed by DWP Medical Advisor Mansel Aylward. Carol Blacka nd Peter White of the PACE trial advised UK Gov on this and reforms.”

 

[heapsreal]

𝗡𝗖𝗡𝗘𝗗 𝗶𝘀𝘀𝘂𝗲𝘀 𝘀𝘁𝗮𝘁𝗲𝗺𝗲𝗻𝘁 𝗼𝗻 𝗡𝗜𝗖𝗘 𝗴𝘂𝗶𝗱𝗲𝗹𝗶𝗻𝗲𝘀 𝗳𝗼𝗿 𝗠𝗘/𝗖𝗙𝗦

NCNED supports the rejection of graduated exercise therapy (GET) and cognitive behavioural therapy (CBT) as purported treatments for ME/CFS. When guidelines suggest possible treatments that do not provide benefit or indeed may cause harm they should be discontinued.

Importantly, the scientific basis of ME/CFS now speaks for itself.

NCNED has reported in at least four publications (see below) evidence for the pathophysiology of this illness as a calcium ion channel disorder (channelopathy).

Specifically, NCNED has demonstrated impairment of a non-specific calcium (Ca2+) ion channel known as Transient receptor potential Melastatin 3 (TRPM3).

Repeated experiments on natural killer (NK) cells from ME/CFS patients have shown 100% impairment in function associated with TRPM3 dependent Ca2+ transfer into these cells. The distribution of TRPM3 is widespread, in particular brain (including eye, choroid plexus, hippocampus, cerebellum), spinal cord (dorsal horn ganglia), muscle, gastrointestinal, cardiovascular, immune and urogenital systems. Indeed, the distribution of TRPM3 shown to be impaired reflects the symptoms experienced by people with ME/CFS.

As Ca2+ is essential for numerous cellular functions in tissues, impairment of TRPM3 ion channels has a devastating effect. Neither GET nor CBT has a proven role in TRPM3/Ca2+ metabolic therapeutic pathways.

NCNED has also shown restoration of function of NK cells in the laboratory using pharmacotherapeutics known to affect TRPM3. These findings suggest that available drugs may offer benefit to people with ME/CFS. This evidence provides a scientific basis of this illness and a rationale for clinical trials to be undertaken.

NCNED Team
1. Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients. Hélène Cabanas, Katsuhiko Muraki, Natalie Eaton, Cassandra Balinas, Donald Staines, Sonya Marshall-Gradisnik. Mol Med. 2018; 24: 44. Published online 2018 Aug 14. doi: 10.1186/s10020-018-0046-1PMCID: PMC6092868.

2. Validation of impaired Transient Receptor Potential Melastatin 3 ion channel activity in natural killer cells from Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis patients. H. Cabanas, K. Muraki, C. Balinas, N. Eaton-Fitch, D. Staines, S. Marshall-Gradisnik. Mol Med. 2019; 25: 14. Published online 2019 Apr 23. doi: 10.1186/s10020-019-0083-4PMCID: PMC6480905

3. Naltrexone Restores Impaired Transient Receptor Potential Melastatin 3 Ion Channel Function in Natural Killer Cells From Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. Helene Cabanas, Katsuhiko Muraki, Donald Staines, Sonya Marshall-Gradisnik Front Immunol. 2019; 10: 2545. Published online 2019 Oct 31. doi: 10.3389/fimmu.2019.02545PMCID: PMC6834647

4. Potential Therapeutic Benefit of Low Dose Naltrexone in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Role of Transient Receptor Potential Melastatin 3 Ion Channels in Pathophysiology and Treatment. Helene Cabanas, Katsuhiko Muraki, Natalie Eaton-Fitch, Donald Ross Staines, Sonya Marshall-Gradisnik.Front Immunol. 2021; 12: 687806. Published online 2021 Jul 13. doi: 10.3389/fimmu.2021.687806

 

[Learner1]

𝗡𝗖𝗡𝗘𝗗

What is this please?

 

[heapsreal]

What is this please?

Its just underlining their fb page,
National centre for neuroimmunology and emerging diseases NCNED, i think??

 

[SWAlexander]

Its just underlining their fb page,
National centre for neuroimmunology and emerging diseases NCNED, i think??

On one site science and on the other side, ME/CFS is put back in a box of misfits. I´m beginning to feel helpless.

 

[Haley]

Its just underlining their fb page,
National centre for neuroimmunology and emerging diseases NCNED, i think??

That's it @heapsreal

They're a research centre that forms part of Griffith University in Australia.

 

[andyguitar]

I wonder what their real MOTIVE is behind not accepting the guidelines.

Vanity?