By David Tuller, DrPH
Carol Monaghan, a member of Parliament from the Glasgow area, has done it again. This week she is spearheading a three-hour debate in the House of Commons about the awful situation confronting ME patients in the UK. (The organizers of this debate are using ME, not CFS or ME/CFS or CFS/ME. As readers know, the issue of what to call the disease or cluster of diseases is fraught.)
This will be the third parliamentary debate she has organized in the last year. The difference this time around is that the debate will be held in the House of Commons itself, not in Westminster Hall like the first two. House of Commons debates are a much bigger deal. They tend to receive more press attention and have a greater potential impact on policy developments going forward. They also allow for a vote on a motion put forward by the organizers. (Of course, given Brexit insanity, itâ€™s unclear how much coverage anything else will get, just as Trump insanity overwhelms every other issue in U.S. news coverage.)
The first two debates were held in February and June. In these initial forays, Monaghan focused on the PACE trial, among other issues. In doing so, she provided the single most damning quote about the study that Iâ€™ve heard from anyone in UK politics. â€œI think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century,â€ she declared.
(I have suggested that this claim is too modest. When the full details become known, it could be considered one of the biggest medical scandals of the millenniumâ€”even though the millennium is only 19 years old.)
Along with three other MPs, Monaghan presented her case for the new debate in late October. More than 30 MPs overall supported the call for the House of Commons debate, so the push is a cross-party affair, not a partisan issue. Apparently members from across the political spectrum have recognized the stunning failures of the UK medical and academic establishments in this particular situation. Many undoubtedly became aware of the problems through contact with constituents suffering from the illness, which is how Monaghan stumbled onto it. Before that, she said, she knew next to nothing about the issue or about the PACE trial.
(Here is a Q-and-A with Carol Monaghan I posted last March.)
The motion proposed for consideration touches multiple important bases. Here it is:
â€œThat this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance onÂ diagnosisÂ of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures.â€
In addition to these critical issues, it is my hope that one of the presenting MPs specifically calls out both the University of Bristol for its scientifically invalid research into pediatric manifestations of the illness and BMJ for publishing these bogus studies. I have documented over and over that this research violates multiple core methodological and ethical principles and should never have been published in the first place. Yet instead of taking action to correct the scientific record, BMJ has stonewalled and, in some instances, conveyed false information or absurd arguments in its defense. The Bristol University vice chancellor, for his part, has filed multiple complaints with Berkeley to try to shut me up. That obviously hasnâ€™t worked.