Trial By Error: A Conversation with Patient Advocate Adam “Beyonce Holes” Lowe

By David Tuller, DrPH

Adam Lowe, known in some incarnations as Beyonce Holes, is a longtime ME/CFS patient and advocate in Manchester, England, served as a lay member of the committee that produced the new clinical guidance published last October by the UK’s National Institute for Health and Care Excellence. (This conversation was a follow-up to one I previously posted about his experiences on the committee.)

We also discussed other recent developments. The first was the release in May of a report called Rethinking ME by the All-Party Parliamentary Group on ME. The same month, then-health minister Sajid Javid launched an effort to promote research into the illness, boost awareness, and improve services for patients. Javid indicated publicly that the plight of a close relative had heightened his awareness of the issue. (Javid resigned this month during the collapse of Boris Johnson’s leadership, so the exact future of this initiative is not clear.)

I was having some issues with Zoom, so Adam kindly recorded the conversation for me. I also forgot to turn on my video until half-way in, so for the first part I’m just a disembodied voice.

6 thoughts on “Trial By Error: A Conversation with Patient Advocate Adam “Beyonce Holes” Lowe”

  1. The NICE ME/CFS guideline states that for a doctor to suspect ME/CFS all of 4 symptoms must be present - – see Box 2. This advice doesn’t seem to be reaching doctors. I don’t have PEM, my tiredness/fatigue has always come with exercise, not after it, and yet a recent hospital appointment for an unrelated problem (in which my tiredness/fatigue issue was not discussed/assessed in any significant way) resulted in a clinic letter in which chronic fatigue syndrome was raised as a possible diagnosis. My suspicion is that these terms are still being used as prejudicial shorthand for likely somatization to undermine patients with medically unexplained symptoms. Whatever the reason in my case, sloppy mislabeling needs to stop. ME patients must be a well defined group, not a convenient wastebin category for all those who doctors can’t be bothered with or are prejudiced against. I think the charities need to make sure that this message is getting through.

  2. Clearly if this guideline is *mistakenly* attributed to patients who actually have *Myalgic Encephalomyelitis (M.E.)* it will be *dangerous for them*

    A SEID’er (rehash, or another stab at a *CFS* definition) (IS “NOT” AN M.E. PATIENT!!!)

    By definition; they are a *misdiagnosed* “CFS” patient.

    There’s *no diagnostic test* for SEID which is *not the case for Myalgic Encephalomyelitis (M.E.)* where a *swift & rapid diagnosis* can be made upon falling unwell with *M.E.*

    Have these patients had an “acute demyelinating encephalomyelitis” by an *enterovirus* which is what *Myalgic Encephalomyelitis (M.E.)* is, of course they haven’t?

    SEID’ers *shouldnt be talking on behalf of M.E. Patients either*.

    Of course they havent got a clue; what that is even like; to even have ?

    Because they ain’t one.

  3. Games at the expense of patients. People that don’t have ME are suggesting that they have ME by calling their lack of energy ‘ME/CFS’. Journalists and politicians shouldn’t support this deception.

  4. In response to Guido den Broeder’s comment,

    Some people who don’t have ME may be wrongly suggesting that they have it, but I suspect that in many cases their doctors are putting that idea in their heads. I’ve been told by doctors on several occasions that I likely have ME. I’m around 99.9% sure that I don’t. If I hadn’t known someone with ME then I might well have believed them. To my mind, it’s the doctors that are the problem, not the patients who simply know that they don’t feel right and seek medical advice, wanting to be helped (not hindered).

  5. Steve Hawkins

    I remember my first knowledge of M.E.: my very much younger, fitter, self, was having trouble explaining what had been happening to me increasingly frequently during and after exercise, and when caught outside when temperatures changed. After a few preliminary checks and a suggestion of an ulcer only found that I was allergic to the ulcer medicine, I was sat in his waiting room one day, reading through the pile of old medical magazines, when I came across an article that seemed to be pretty close to what was happening to me. I took the magazine–HIS magazine–into the consultation room with me and showed it to him. He threw the magazine at me and told me to get out. This set the scene for most of the next 35 years (and counting).

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