By David Tuller, DrPH
Adam Lowe, a patient, was one of five lay people on the committee pulled together by Britain’s National Institute for Health and Care Excellence to work on the new ME/CFS guideline. He and I spoke recently on Zoom about his role in the process.
Tracey Burgess says
Thank you David and Adam. I think and feel that was a really useful, level headed exploration of the issues surrounding the revised ME/CFS guidelines.
Now that the guidelines have actually been published, it may possibly be easier to see the strategic move to pause their publication to wrong foot the media backlash. However, I believe the pause resulted in immense distress within the ME/CFS community.
Now, I think it’s time to pick up the pieces and move into the next phase of the process: to dismantle the use of harmful, graded exercise/activity treatments and CBT as a curative treatment and instead listen to patient’s lived experience with respect.
With the risk of being strung up and roasted myself, dare I ask if the turkey was an opening metaphor for something that, no matter how well cooked, was unlikely to hit the spot, has had to be swallowed and stomached by many, but for which everyone was supposed to give thanks?
Pragmatism has its place, but given the magnitude of this ongoing medical disaster, was it really the most appropriate approach? Iâ€™m in two minds about that.
Iâ€™m thankful to Adam and other committee members for their part in helping to secure the change to the guideline that means that things have shifted to a degree in the UK and that some (especially new) patients may now be saved from harm. But I donâ€™t think the new guideline will achieve enough, soon enough, for moderate/severe patients or for those who have spent the larger part of their lives with no effective treatment package and no clear prospect of one. In the guideline review, NICE identified around 8 times more papers/documents regarding non-pharmacological interventions than those concerning pharmacological ones. To my mind, that speaks volumes and must be rapidly turned around through immediate funding of good biomedical research that particularly engages with those who are suffering the most.
The guideline is a disaster for genuine myalgic encephalomyelitis patients. It will lead to deaths. Non ME patients wrote this CFS guideline on the whole. The fact Greg left this guideline whos wife is a genuine ME patient is very telling. I bet he knows more about actual M.E. than any other person on the committee. You dont treat people like that Im afraid. The sooner ME is split from misdiagnosed CFS patients. The better. Until then ME patients will never receive appropriate care. They will die. Doctors will be confused about what M.E. even is. Its now misdiagnosed CFS patients that are causing problems for ME patients. Not doctors. Of course a misdiagnosed CFS patient knows nothing about actual M.E. as its not a pathology they have even ever had. So why would they know anything about M.E. ?
David Tuller says
Who is Greg?
He has campaigned for decades.
His wife Linda has been bedridden for most of 30 years. She has very st err neurological ME.
Greg was a nurse. He has written books in caring for ppl with severe ME. He & Linda were the first ppl on Yourube talking about it all back in the 2000s, he attended Parliament when the Gibson Inquiry was happening & had the Stonebird blog: https://www.stonebird.co.uk/
Adam Lowe says
Greg didn’t leave the guideline. He was due to give evidence as an expert witness but couldn’t because of personal reasons (he is a full-time carer, so that’s not too surprising).
Thank you, Adam, for all the work you (and the other patients) did to help develop the NICE guidelines. Attending each meeting was a major undertaking, I’m sure. Thanks also for sitting this interview with David Tuller. It’s great to hear from a participant a real account of events, including why NICE paused the release of the guidelines in August after everyone had worked so hard developing them.
Adam Lowe says
Thank you, Susana. It was a pleasure and an honour to do this for my community. Even if we’ve never met, I felt a duty to help make a better medical environment for all my fellow pwME!