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.
Couch Turnip says
That’s all good to hear. However, the 2019 NICE Conference agenda has recently been published. In one slot Dr Phil Hammond is chairing a presentation/discussion on the type of evidence that can be used to inform NICE guidelines. It is my understanding that Dr Hammond works with Esther Crawley at the RNHRD in Bath. He is also a well known and practised speaker/TV personality/raconteur/health campaigner who spoke at the huge #OurNHS demonstration in London in March 2017. The ‘real data’ that he will be referring to almost certainly the data that is being mined from ME/CFS patients in the MUS arm of the IAPT. Wake up and smell the coffee. ME patients and advocates urgently need to challenge the whole MUS construct, not hide behind a ‘ME is not MUS’ mantra.
I am grateful Berkeley knows a wrong’un, glad you have not been silenced David, please do keep on exposing the truth.
As Carol Monaghan MP said, PACE is a scandal.
Sam Pearce says
A luta continua! THANK YOU for your sustained pressure. You’re building our #DRIPs to a tsunami.
Great. If you talk to Carol please tell her to mention the following also: Simon Wessley being given a platform to speak at the 2019 NICE conference; the flawed Cochrane review for which there has still been no retraction or apology for distress caused to patients; the dodgy NICE committee composition. Please can these things be mentioned in the parliamentary debate. Public funding is being used for all these things.
Frances Burkhard says
Thank you for all you are doing to right this wrong . In 2019 we still do not know the causes and treatment needed for ME but doctors do need to wake up to the fact that many illness that we can treat today were undiagnosable decades ago .
Doctors are civil servants paid like teachers by our taxes so the medical profession has a duty to do more research and to treat patients with respect . It is a physical illness not a pychological one as studies in America are beginning to prove.
I totally agree with the above commenter. It is time to go to war against the concept of “medically unexplained symptoms”. The medical community needs to get a strong slap in the face, and be given firm direction about how to proceed with MUS. When face with “medically unexplained symptoms” then we must… 1) acknowledge and document that the symptoms exist and in some cases are incapacitating. 2) acknowledge and document that the doctor does not understand the cause of the symptoms 3) acknowledge and document that the condition, which does exist, is UNTREATABLE due to the limits of modern medicine (or limitations of the specific doctor) 4) offer, BUT NEVER REQUIRE, palliative care
Patients with incapacitating SYMPTOMS must be categorized according to their FUNCTION regardless of whether doctors can explain their symptoms, which includes certifying disability.
Also, we need to track MUS cases and address them from an epidemiological perspective. If half the country is on disability due to MUS, then the medical community needs to wake up and start doing their jobs.
It is clear to me that there is a great deal that doctor’s can’t “explain” and we need to put our foot down as regards their continued efforts to diagnose and treat conditions which they claim do not exist. There is another word for that… FRAUD. And, another word for treatments for conditions that doctors cannot explain… SNAKE OIL.
PACE is more than a scandal. PACE is a fraud.