By David Tuller, DrPH
On Monday, The Times (UK) published a story about a 17-year-old girl with ME who has experienced hospital treatment that her family has referred to as “neglect and abuse.” The details are harrowing—but should not be unfamiliar to people aware of similar experiences reported by other teenagers with severe ME.
Parents and kids caught in the grips of practitioners at National Health Service facilities often decline to speak out about mistreatment, for fear of medical and legal repercussions. In this case, the mother, Joanne McKee, has taken the opposite step and gone public. She disseminated information on social media and spoke with the press.
Here’s the opening of the Times story:
“A mother has said an NHS hospital failed to offer her daughter adequate pain relief in a pattern of poor treatment that left the teenager suicidal.
“Ella Copley, 17, from Tingley, West Yorkshire, has suffered from ME (myalgic encephalomyelitis), sometimes known as chronic fatigue syndrome, for seven years. She has been in Leeds General Infirmary since March, when she was taken there by ambulance with an infection later diagnosed as sepsis.
“Her mother, Joanne McKee, 49, said the treatment Ella had received ‘feels like neglect and abuse.’ She has posted videos on social media of the teenager screaming in pain when medicine is given via a feeding tube into her small intestine. ‘I don’t think they believe that her pain is real at all,’ she said.“
As has been The Times’ recent practice, the story identifies the illness first as ME, adding that this condition is “sometimes known as chronic fatigue syndrome.” In fact, chronic fatigue syndrome has been the primary name in use for decades. Only in recent years have efforts by the patient community to reclaim the older name “myalgic encephalomyelitis” achieved some success. So The Times‘ linguistic position on this matter seems notable to me. (Government agencies in the UK and the US now routinely use the term ME/CFS.)
What’s also interesting is that The Times has chosen to highlight this dispute at all. I mean, disputes between patients and hospitals over treatment approaches are not that unusual. In general, ME has not been on the radar of journalists as a particularly credible or necessary domain to cover. Lots of diseases have a sexier public image, even more so if they have a celebrity sufferer or two. Like migraines and Khloe Kardashian!
A few years ago, I think a conflict of this kind involving ME would have have been much less likely to receive the kind of sympathetic and high-profile attention provided by The Times. For the most part, the misguided views of a group of powerful experts have dominated this field of medicine. Many journalists have accorded this self-promoting lot far too much deference while doubting or questioning the accounts of patients.
In May, when the UK government announced a new initiative on ME/CFS, Sean O’Neill, a longtime Times reporter, wrote a heartbreaking article about his 27-year-old daughter, Maeve, who had died from the illness last October. In the previous year, O’Neill had written a series of articles documenting the many challenges confronting ME patients. An inquest into the circumstances surrounding Maeve’s death has been scheduled for next month.
The Times’ science editor, Tom Whipple, has written some accurate and timely articles on the controversy over ME, including a 2018 story about an open letter to The Lancet that was signed by 100+ experts and criticized the PACE trial’s “unacceptable methodological lapses.” (I organized and sent the open letter.) But I hope and assume that Sean O’Neill’s writings in particular have sensitized his journalism colleagues–not just at the Times but also at other news organizations–to some of the life-and-death realities of ME.
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Norway’s unfortunate decision on Lighting Process study
I have written frequently about the Lightning Process, most recently about a proposed clinical trial in Norway. On July 13th, NEM, the Norwegian research ethics authority, announced that it has approved the trial, even though the proposal remains riddled with methodological and ethical problems.
This was the second go-round for this study. Last year, a previous proposed version was also approved at the regional level but was rejected by the NEM. This year’s NEM panel included members who were not involved last year. The NEM decision is final.
Patient advocate and writer Nina Steinkopf has extensively covered the debate around this trial on her blog, MElivet. Here’s the start of Steinkopf’s most recent post:
“A long-planned study where 100 ME patients will be treated with the alternative method Lightning Process received ethical approval in 2020. Following complaints, the approval was withdrawn in 2021. After a minor adjustment in the study design, the project received new ethical approval. New complaints have not been taken into account.”
This was not a unanimous decision. Three of the 12 members on the NEM panel dissented from the majority, and reiterated concerns raised by the Norwegian ME Association and other critics of the study. In its report on the ruling, NEM outlined the concerns raised by these dissenters:
“The minority…believe that the change that has been made [to address concerns about the proposed study] is not sufficient to make the research ethically sound. The minority believes that the research fellow’s strong self-interest and prominent role in the project must be offset by a solid research method if the results are to have credibility. The primary endpoint of the study is based on a questionnaire with self-evaluation of symptoms and function. This is less suitable as an objective evaluation if there is real doubt about the researchers’ independence, and the validity of the answers also becomes uncertain when a central part of the course consists of learning verbal reformulations of one’s own experiences.
“The minority further believes that the potential for physical side effects has not been sufficiently taken into account, as the participants may have unknown underlying diseases. One of the characteristics of CFS / ME, based on the criteria by which the project itself operates, is precisely effort-induced fatigue, and the risk for vulnerable participants therefore appears to be real.
“In line with the rest of the committee, the minority also wants increased research on the treatment of CFS / ME. Due to a controversial field, it is important that the research is based on a solid method and that it appears independent in order to achieve credibility. The combination of self-interest and not very objective outcome measures means that the committee’s minority considers the potential benefit of the research project to be small. Based on an overall assessment, the minority finds that the project is not ethically justifiable to carry out in its current form.”
Although the majority added some extra conditions for the trial regarding disclosures and data access, the substantive concerns articulated by the panel members in the minority were apparently not convincing to their colleagues. So this flawed research project will proceed.
It is remarkable that presumably sophisticated and science-savvy panel members could find this particular study of this particular intervention to be adequate to the task of producing actionable knowledge. Even putting aside conflict-of-interest concerns, if an intervention induces you to think that acknowledging symptoms or illness means you’re failing, then you’re less likely to acknowledge symptoms or illness at follow-up compared to patients who haven’t received the intervention.
That shouldn’t be so complicated to understand. But the logic apparently doesn’t seem to translate well into Norwegian.
Here’s hoping that the message will finally end up being picked up by journalists that the issue is the certain medics, research, treatments and ideology/attitude that underlies them being controversial.
Recent events of this kind can’t help but make me think back to a few decades ago where I’m sure there was a story or too about the odd practitioner who became so convinced they could use the mind to cure pain whatnot that it got out of hand when they imposed it in inappropriate circumstances without choice. The weird difference here is that noone writes about the BPS and mind-body stuff like that anymore
Looking up the Leeds story and the individuals involved it seems one runs an adolescent unit for chronic pain. A that point I thought there are so many angles where this mistreatment could have come from (ie it might not ‘just’ be ME stigma’ it could be any adolescent is getting this sort of thing instead of pain management because that’s where it falls, or it could be the attitude to ‘chronic’ – whatever it is, and that getting no pain management even if a new symptom or an operation etc, which has puzzled me as a way it seems the new chronic pain guidelines warp a bit). It’s particularly bad for ME because the exertion from things like noise and pain actually causes deterioration in the illness too, as well as being torture because it is avoidable. And we’ve all been there when medics get a ‘well that shouldn’t look like that or, the body shouldn’t have reacted like that’ moment. I’ve yet to see one where genuine curiosity is the only thing that comes across medics’ face (often you have the answer, so goodness knows why they are busily telling you nonsense that it isn’t in their convinced way – but that exact dynamic definitely causes issues too).
And has clearly some funding and insistent belief sets about how they believe all of that should be managed. It’s now crossed a line where that person is over-ruling investigations and making sure there actually isn’t an acute reason for the pain first. I noted one Times comment, people were doubting the nasogastric tube would cause pain until someone noted they’d misread and it was a Jej tube, to which there was a reply that ah well that is different if that’s the case as they can be misplaced etc.
It is such a warping to go from a few techniques for milder pain in situations where you now there is no issue to be addressed/fixed and someone has asked to try something different to allowing these people to write guidelines taking lowest common denominator research with averaged effects across different people into territory they know nothing about. And to become so adamant they are given power where others no longer use their eyes or check what a patient says. I just find the whole thing so horrific. And yes hope that one day we can all wake up, beyond ME/CFS included, and have the how on earth was that able to happen where those people could cause such havoc attitude back again that seemed to be how this would have been seen a few decades ago.
And yes the types of people who tend to go into pushing these things often are exactly the wrong sort to be given license – that is just watching enough of them from experience. They say good intentions, but few come to it because they went through terrifying painful experiences and want to help in the way we’d understand it – I don’t know what the term for it is, but if we are going to prevent this sor of thing being a carousel every few decades we need to begin studying that and them as they do tend to get carried away and become blind to the plight, or anything in any context that it doesn’t work once convinced of their own magic. But why does the person alongside them not see through it not working and call it? How on earth do such people end up with such power over humans and noone checks for mission creep? Scary really.
Thank you for covering this story, I have no idea what the future holds for my daughter but I DEFINITELY know it is bleak. When someone is dismissed so much that they think death is a better option then we all need to stand up and be heard. This campaign of cruelty against my daughter and other suffers has to stop. The comments i read on the Times were disgusting! My daughters pain comes from a severely distended abdomen and Jej, she has h-eds, MCAS, severe ME, PoTS, bladder failure and now intestinal failure. The comments said she needed a psychiatrist or i had Munchausens!!! I have never been so disgusted and disillusioned that this practise or treatment is legal.
Hi Joanne, My heart breaks when i read your story. I wish you and your daughter much strengt and love. And try to ignore those grazy people. They really need much to learn in this life.
Thank you for highlighting both these stories.
As a long term ME patient (and thus a child when my ME first began) I can attest that disbelief about patient’s symptoms by medics is almost universal. I can also attest that as far as I know (in the sense that I can’t remember any of my ME friends offering observations to the contrary) pretty much every single patient who has ME and is living in the UK has been gaslighted by medics and many have been abused by medics, ie, iatrogenically harmed or neglected. This aspect of the story needs prominent telling and re-telling and I’m so glad to see The Times willing to cover this hideous situation. Clearly, despite the changes in the NICE Guideline (which is still completely unfit for purpose, it simply isn’t mandating harmful ‘treatments’ anymore), doctors and other medical personnel continue to abuse their ME patients.
I think this example represents cruelty and discrimination against patients that is now endemic across the NHS. They don’t have to be ME patients, but I suspect it really helps. Why? Because, as the apparent lynchpin of the BPS MUS model (that I believe amounts to institutional abuse) ME patients must surely be deemed to be the lowest of the low or, in other words, those most likely to be somatizing to the greatest degree, and therefore the worst wasters of NHS resources and the greatest threat to doctors and themselves? But don’t forget all those others who are assumed likely to be somatizing too, victims of their circumstance – those considered more likely to be mentally unstable or ill or to have suffered trauma – women, the impoverished, the overweight or obese, ethnic minorities, LGBTQ+ patients, refugees of war, famine or natural disaster, the mentally ill – in fact anyone who isn’t white, male, heterosexual, slim, well-educated, middle- or upper- class, of supposedly sound mind who has had quite an easy, privileged life. (I suspect even a few of the latter may get sucked in too from time to time when tests come back negative, but to nowhere the same degree as the rest of us.)
What I see is a MUS monster that has ravaged our healthcare system (and that is rapidly morphing into its ‘functional’ identical twin) by wielding a dogma that discriminates against all the vulnerable groups in our society, leaving many patients in horrendous suffering and pain. But nobody in government OR OPPOSITION seems to take any notice, I assume because they all want to find NHS savings at any cost. The UK Government has just published its “Women’s Health Strategy for England”-https://www.gov.uk/government/publications/womens-health-strategy-for-england/womens-health-strategy-for-england#menstrual-health-and-gynaecological-conditions. Scanning down it, I can’t see any mention of the MUS construct that is almost certainly risking women’s health, day in, day out, across the NHS, as doctors dismiss their symptoms as psychosomatic because they have been taught that women are far more likely to be somatizing than men. The nearest it comes to it would seem to be the section on “Menstrual health and gynaecological conditions” such as endometriosis, where it’s noted that women’s pain may be dismissed as “normal” and that it may take months or years for endometriosis to be diagnosed. But, as far as I can see, there’s no mention of the fact that, under the Government’s watch, the NHS has promoted an MUS strategy that has likely followed guidance for NHS commissioners produced by 2 Royal Colleges – the RCGP and the RCPSych – in which “chronic pelvic pain” including pelvic pain, painful periods and painful sex in the specialty of gynaecology is listed as an example of a “functional somatic syndrome” – https://www.slideshare.net/jcpmh/guidance-for-commissioners-of-services-for-people-with-medically-unexplained-symptoms (see page 6 of the guidance). The Government giveth and the Government taketh away, it seems.
Why is this relevant? It may not be about ME but I believe it’s all part of the same strategy that discriminates so badly against patients, especially female ones. I’d be very surprised if ME patients hadn’t contributed to the women’s health consultation, but I can’t see the gaslighting of ME patients by their doctors being flagged up as a problem in relation to women’s health either, even though there are what, around a quarter of a million ME patients with 3/4 or so being women, so close to 200,000 women (or around 0.6% women) being put at risk by this appalling BPS/MUS strategy? I think that UK journalists (including Sean O’Neill) really need to be made aware of what our revered Royal Colleges have been putting out and what the UK Government and NHS may well have been happy to go along with, especially in relation to women’s chronic pelvic pain.
So sad that Sean O’Neill had to endure the death of his daughter for me to be taken seriously by the times
Thank you CT for the link to Guidance for Commissioners…….22.There should be a positive emphasis on ‘function’ rather than ‘cure’. I disagree, it should be the other way around.
Very many people will have needlessly died because of the MUS construct, not to mention the millions whose lives will have been made a torturous misery and those who have been forced out of the workplace because they can’t ask for reasonable adjustments at work if they have no proper diagnosis. And yet the Bank of England seemingly scratches its head over why the number of economically inactive women with health issues has risen, and so sharply, and at a much faster rate than men -https://www.bankofengland.co.uk/speech/2022/may/michael-saunders-speech-at-the-resolution-foundation-event. Serious UK journalists need to wake up to what has been going on.
This is how I see it:
When we had a global pool from which to recruit employees, maybe the UK Government wasn’t all that bothered if a percentage of UK citizens died unnecessarily and millions more suffered for the sake of making so-called efficiency savings to the NHS budget. If people left the workforce for whatever reason they were replaceable. The Government could keep trying to reduce NHS spending by, in part, limiting physical healthcare provision across the board. But perhaps I’m being unfair. After all, it looks to me like they were sold a pie-in-the-sky economic theory – that by addressing mental health problems (via the IAPT programme and similar) the physical health of the nation would improve, and with it presumably productivity, and that the cost of the IAPT programme would be met by the savings made to the NHS’s physical healthcare budget. (Wasn’t that the theory? Please correct me if I’ve got it wrong.) I’d suggest that for those NHS savings to materialize, some physically ill patients – those with medically unexplained symptoms – had to be regarded as mentally ill instead, somatizing their unexplained symptoms. Rather than receiving thorough investigations and good care they could be offered cheap CBT. Doctors were persuaded by quite a full-on campaign that this was good medicine. Seemingly viewed as the archetypal somatizing patients, ME sufferers have almost certainly been front and centre in that line of fire. Now, I fear, we are witnessing (and suffering) the terrible fallout of this economic theory and it won’t be easily reversed because doctors now apparently believe that they are doing the right thing by casting their more challenging patients with unexplained symptoms into the MUS mental health waste basket. Medical neglect has been legitimized.
Well that’s the way I see it, and I wish that journalists and economists would take a serious look at this before the health and productivity of the UK public goes down the toilet (especially now with long covid) and life expectancy plummets with it too.
(UK ME patients and advocates can, of course, be isolationists if they want to be, concentrating on the unquestionable misery and injustice of their own illness, but unless they understand and engage with the bigger picture and join up with other patient groups who are suffering greatly too – for starters those covered by the “functional somatic syndromes” entries in Table 1 in the JCPMH’s guidance on MUS – their chances of getting things to substantially change are pretty limited, I think. )
To put it more simply, I suspect that the Bank of England’s concern over rising UK economic inactivity due to ill-health may be the first indication that, rather than helping the UK economy, the NHS’s apparent strategy on MUS could instead be causing serious problems for it.
With GPs perhaps believing that up to 45% of their patient consultations are due to MUS -https://bjgp.org/content/67/656/106, and hospital doctors likely thinking that the MUS rate is even higher for them, how many physically sick people are now being turned away from physical healthcare and left to struggle on their own? Does this make for a productive economy? I don’t see how it can. Isn’t healthcare supposed to help keep people in work, not hinder it? The BPS model looks broken to me and it’s really no surprise if UK employers are struggling to fill the vacancies they have.
I’m reading Dr Tuller’s latest essay while listening to a CBC radio Atlantic Canada region call-in regarding health care. Or rather, the lack of it.
Recently an old man died in a wheelchair in the Emergency Room waiting area. He died alone and in distress in the middle of the night, in the middle of a busy hospital, in the New Brunswick provincial capital. Or maybe the ER wasn’t real busy, but very short-staffed; there are reports that nurses routinely work 24 hour shifts because there is no one to relieve them. Yes that’s right: 24 hours shifts. Routinely.
The result is people are waiting 8 to 12 hours to see a doctor, only to be given the wrong diagnosis and/or inadequate treatment, and the need to do it all again in a day or two.
Throughout “Western” societies, the medical machines are rapidly breaking down. Health care professionals are ending their careers prematurely for reasons of Long Covid and/or job burnout. In Atlantic Canada there are tens of thousands of people waiting for a primary care provider, one reason the ERs are so crowded.
For US people who have primary care physicians, patient care is generally awful. Clinics are unable to efficiently manage their operations. Absolutely nothing in the medical world happens without a half-dozen screw-ups and a dozen phone calls. In almost any other industry, such poor administration would result in no customers.
Good thing for doctors that they have a monopoly.
Lousy healthcare is a five-alarm emergency and our dear leaders are responding to it by hiring dumb asses like Regius Professor Sir Simon Wessely and Professor Dame Clare Gerada to tell them that the cure for *everything* is exercise and computerized CBT.
Why do I keep seeing an image of Nero giving a concert on his front steps…
I wish the family well in their fight for better treatment.
Severe ME issues are ongoing and affect all the 60-70, 000 with severe ME in the UK, universally ignored. Each tragic case draws to attention to flaws that have existed decades.
Leeds ME/CFS Service was moved, without challenge, to a psychiatrist led service several years ago.
The Leeds severe ME inpatient service (the only one in existence now) is housed in a mental health ward.
Little is known about this service and afaik there has been no liasing with or over-sight from the ME charities.
Severe ME has had barely any research, despite it being stated as an obvious priority many times. Ignorance and lack of explanations fuels the disbelief and hostility (many people state that the more severe they get the less the belief and more the psychologisation) .
Severe ME won’t be being taught in UK medical schools.
The only doctors in the country with any severe ME expertise are retired or in the private sector, unable to provide hands-on care or supervision. No-one (except ironically Leeds NHS) in the state sector is providing medical care for severe ME or documenting its affects and outcomes.
The new NICE guidelines do NOT stipulate that ME services should be lead by a physician, which perpetuates a therapist approach to managing the mild-moderate and leaves the severely affected with the barest minimum of management recognition (being ignored in this case) but nothing else. Clearly for people with breakdown of multiple systems and in severe pain, doctors with expertise beyond “theories about central sensitisation” are needed.
Rather than only fire-fighting individual cases in apparent astonishment that this is actually an extreme example of the norm (many of the severe will be in some type of battle with the NHS over something), it would have been better to have had the care, research and treatment for the severely affected as a priority. If we had had this, we would not be where we still are now. 2022.
From what I recall, The Times’ medical advisor/columnist used to be one of Wessely’s staunchest allies, and wrote a number of articles pouring scorn on M.E. ‘worried well’ ‘nuisance/heart-sink’ patients… Surprising to read of positive articles coming from this antediluvian tome now, but I’m not at all surprised to know their comments stream is still the same.
Incidentally, the ‘Wesseley effect’ runs much wider than just ‘CFS’ ‘MUS’ ‘FND’ ‘IAPT’ etc. He cut his teeth of denying the existence of Gulf War Syndrome and trying to reduce the costs to insurance cos, by having it classed as psychological. Survivors of this syndrome, and the later ‘burn pits’, and ‘first responders’ chronic illnesses are still being treated worse than dirt in the US Senate even to this very day: Republicans just killed a bill to help them, that they had previously passed. They did this entirely to ‘stick it to the Libs’. Real suffering patients are less than dust to those who make the decisions of who gets help and who can shut up and die.