Month: March 2021

What is MAGENTA?

“During the graded exercise therapy course I began to have episodes of paralysis below the waist. Because of this, my paediatrician stopped the therapy. I have never been able to return to my level of health prior to graded exercise. It rendered me housebound and triggered off a number of new symptoms as well as worsening the severity of my old symptoms and worsening my overall health, mobility and cognitive ability to severe. I went from mild/moderate ME to severe ME following graded exercise therapy.”

patient response to an ME Association survey

    • MAGENTA is a trial of graded exercise therapy in children aged 8-17, diagnosed with ME according to the NICE guidelines.
    • The trial is led by a team of researchers from the University of Bristol. A feasibility trial on 100 children began last year in three UK centres at Bath, Cambridge and Newcastle, funded by the NHS National Institute for Health Research. It is is likely to lead to a much larger trial involving hundreds of children.
    • MAGENTA’s plan for the feasibility trial is justified only by the PACE trial, which has been featured on Retraction Watch for its numerous flaws.
    • In clinical trials on children (under-18s), both the child and their parents/carers must give consent for the child to take part. MAGENTA’s participant-information sheets and consent forms do not mention the controversy over PACE, the many problems with the trial’s analyses, or the harms following graded exercise therapy reported by hundreds of patients in surveys. This raises questions about whether the patients and their parents/carers gave properly informed consent in the feasibility trial, or would be able to do so in the larger trial.

MP letter

This is a letter/email you can adapt and send to your MP to express your concern about the MAGENTA trial (feel free to adapt this if you want to):

[If writing as a posted letter, your address here including email address]

[If writing as a posted letter, MP’s address goes here: you can search for it on the Parliament website]

Date

Dear [Name] MP,

I am one of your constituents.  Please will you take note of and sign the following petition:

“Suspend all trials of graded exercise therapy in children and adults with ME/CFS”.

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a devastating neurological disease that can leave sufferers bedbound and/or tube fed.

Graded exercise therapy is a controversial psychological therapy that relies on evidence from the now scientifically disputed PACE trial.

We are concerned that trials that investigate graded exercise therapy are potentially harmful to participants.  This is all the more worrying when the participants are children, who may find it harder to withdraw from treatment.

Recent biomedical research shows abnormalities in ME patients’  energy production systems including research demonstrating that cellular metabolism is dramatically slowed. This indicates that ME patients cannot generate the resources to exercise as MAGENTA and other graded exercise studies recommend.

Moreover, at a time where exciting biomedical research is being carried out into ME/CFS worldwide it would seem more pertinent to allocate limited funds into building upon this promising research.

This petition means a lot to me, [as I believe that it has the power to improve treatment for ME/CFS patients like myself]. Your support would be much appreciated.

For more information please visit www.stopGET.org.

Thank you for your time

Yours sincerely,

[Your Name]