BMJ: Chronic fatigue syndrome and Long Covid, moving beyond the controversy, 2021, Newman

Thank you @MSEsperanza for posting this. And, thank you to Ian Stirling for his letter to BMJ. (Can't recall if Ian is on this Forum.)

 

Seems likely there is a Wessely connection. Gerada is completely obsessed with patient complaints, believes patients should not even have the right to lodge complaints (because it makes physicians feel bad) and yet again a few days ago in a discussion over physician suicides blamed patient complaints as the most common cause of physician suicides (according to her anyway). This is deeply personal to her for reasons that likely have to do with their own experience, I have no doubt both have been the target of many complaints.

 

Also wow is this article being pushed. Already re-tweeted about a handful of times by BMJ by my count, again in the last hour. They are really doing a campaign here.

 

He may well have done that, but not to set up a GET clinic.

And wasn't that another flaw of PACE? I seem to remember noting in the trial steering committee minutes that the Edinburgh clinic had problems putting anyone on the GET arm because they couldn't recruit anyone to provide that treatment. The trial should have taken some form of clinic clustering into account, but wouldn't have been able to do so if the randomisation [procedure] was broken [disrupted] by a treatment not being offered at one of the clinics.

[edits]

 

Good rapid response from Peter D. White (no, not that one!): https://www.bmj.com/content/373/bmj.n1559/rr-3

 

Yes, well crafted.

 

There is a number of new responses, https://www.bmj.com/content/373/bmj.n1559/rapid-responses

 

Oh absolutely, we should show empathy for these researchers. Some probably genuinely believe in their own claims about the causes and treatment of MECFS. I think we need to treat them with compassion, explain to them that although their beliefs are not actually supported by a lot of evidence, this doesn't make them any less real to THEM. We understand and empathise with their lived experience of being the maligned, beleaguered heroes of this narrative, battling the evil hoardes of unhinged malcontents. We should not attempt to challenge these researchers' own experience, but rather try to build a relationship of trust. Once the relationship has been developed, we can gently encourage them to explore other beliefs that might be more helpful to their overall wellbeing.

Honestly, trying to distinguish between beliefs and reality is so dualistic. The contemporary view is that there is a fluid interaction between beliefs and reality. Alas, many lay people are too stupid to appreciate this and continue to think in terms of simplistic dichotomies. They way to solve this problem is to educate people about the loose boundaries between reality and fiction, so that people with beliefs that don't fit with evidence are no longer stigmatised.

 

I'm genuinely laughing out loud

 

Yikes, some of these are quite bad imo. Can anyone just write one of these? I would have done it the other day, as I had the energy.

It is depressing to see this old "debate" continuing having been brought up again for no good reason. The BMJ in particular has seemed determined to have this particular "debate" about "fatigue" in the wake of Long Covid instead of trying to help new chronically ill patients by taking the opportunity to move on from these long-recited smears and taking points, and encouraging new research. This piece does exactly the opposite. They too will apparently not give up on this disingenuous nonsense until the last possible moment.

 

Yes, anyone can submit a response, simply click on "Respond to this article" in the sidebar. I've submitted one this morning, highlighting the omission from their article of DecodeME and its level of engagement with and involvement of patients.

 

All that the author is telling me in that link is that she despises patients.

But it also tells me that, when patients feel ill, physically or mentally, they desperately want to know what is wrong with them, and I think this is entirely understandable and reasonable but doctors, and society generally, don't. If I feel ill and the only diagnosis I get is a brush off and a prescription for anti-depressants it means that I have no control whatsoever over the quality of my own life.

I wonder how many women who were diagnosed with neurasthenia in the 19th and early 20th centuries were anaemic, for example. I would suggest the percentage could have been very high. But based on that link above, doctors now make fun of those patients from 100 - 200 years ago because they are now assumed to have been mentally ill or lazy or attention-seeking. If they were poor they were assumed to be lazy and if they were rich they were assumed to be attention-seeking.

But anaemia is still a catastrophically common health problem according to the WHO :

https://www.who.int/vmnis/anaemia/prevalence/summary/anaemia_data_status_t2/en/

I think, with hindsight, that I've been low in iron my entire life. I've had ferritin tested perhaps every 5 - 10 years on average. When levels are low enough for a doctor to pay attention and prescribe iron supplements (and that level has to be really, really low) I've been prescribed 2 - 3 months worth of iron supplements and have never, as far as I can recall, been re-tested and re-prescribed after the prescription was finished. A few years ago I discovered I could buy iron-supplements of the type that doctors prescribe without a prescription in UK pharmacies. I also found out that I could do an iron panel with a finger-prick blood test (privately without a doctor being involved). I started treating myself and testing myself regularly, and it took me nearly two years of supplementing at maximum dose to get my ferritin to the middle of the reference interval. I then needed to take iron a few times a week just to maintain it at that point.

Fixing my own low iron unexpectedly eliminated my anxiety. If it worked for me it could well work for others. Anti-depressants never did this. The other thing about the whole "iron supplements vs anti-depressants" question is that the NHS always wants to save money. How is putting people on anti-depressants that they never come off of a good decision from an economical point of view? Iron supplements will do a better job, make the patient feel a lot better and, more importantly, they actually work at improving mental health, whereas anti-depressants very rarely do. And eventually, the patient may be able to stop taking iron supplements without withdrawal effects at all.

 

It was not the views of the author which interest me. It was that the BMJ provided a platform for them, and pinned its colours so firmly to the mast, almost before there was renewed controversy on the subject. One could reasonably take the view that the BMJ instigated it. Such articles serve somebody's interest.

 

My response has been published, https://www.bmj.com/content/373/bmj.n1559/rr-11

Looking at the list of responses, https://www.bmj.com/content/373/bmj.n1559/rapid-responses, the count has gone up by two, from eight to ten, so I would guess another will show sometime soon

 

Great response, @Andy ! There's also a new one, and good, from dr. Shepherd.

- As a charity that funds biomedical research into the cause and treatment of ME/CFS we are not aware of any researchers who hold the sort of negative and divisive views about the ME/CFS patient community that are expressed in this article (1). All the researchers we fund are very grateful for the support and encouragement they continually receive from the ME/CFS patient community. In fact, patients, charities and researchers are all successfully working together on a number of ME/CFS research initiatives such as Decode ME (2), the ME Biobank (3) and the role of cardiorespiratory exercise testing (4).

 

Thanks

Weird, the response from Charles doesn't show for me, yet I can see all the others. Could you post the direct link please?

 

https://www.bmj.com/content/373/bmj.n1559/rr-12

eta:
"The reason why people with ME/CFS feel angry and let down by the medical establishment stems from the fact that almost all biomedical research until recently has been funded by donations to the charity sector. Almost all government funding has gone into research based on a flawed psychosocial model of causation."

 

Coming back to this post, while this article is undoubtably hugely annoying, I actually see it as a positive sign. If the BPSers felt in control of the narrative surrounding the issues commented on, they wouldn't feel the need for these sort of articles - so I would probably see it as two steps forward, one step back.