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

Hasn't the BMJ always done this sort of thing? Who can forget Caroline Richmond's Princess Aurora and the wandering womb?
Myalgic encephalomyelitis, Princess Aurora, and the wandering womb. (nih.gov)

 

Maybe that's a hint to that but I remember a few months ago Henrik posted a weird thread responding to someone with Long Covid telling them that if they ever are near Oxford they should go see Sharpe and have a chat with him about this whole recovering from fatigue thing.

I assume Henrik and Sharpe know each other personally so that's probably not a guess.

 

In this bizarre text which obviously serves no purpose but to attack us for no other reason than we exist, Godlee actually referred to and linked to Chew-Graham's article on the horrible consequences of gaslighting to long haulers and that's just such a bizarre mobius strip of confused ideological dogma that clearly, and I mean clearly, cannot tell their ass from a whole in the ground. Godlee is that horrible power imbalance and there she is, like Chew-Graham, completely unaware of it right as she does it.

It's truly as if they never actually read or consider the substance of what they read, write and share. As if they never actually put a second's thought into any of it, it's all just gut feeling and parroting other people's mutual admiration. Everything is superficial and switches back and forth between acknowledging reality and denying it forcefully, with not a hint of self-awareness. Amazing.

 

Editorials are routinely 'commissioned' without any payment though. I have been asked to do several.

It may be that Newman did this for free because it helps her publicise herself.

 

I was trying to work out what it was - and you beat me to it!
A BiMSCID no less.

 

A rapid response by Charles Shepherd has been published: https://www.bmj.com/content/373/bmj.n1559/rr-0.

 

From Fione Godlee's piece:

"Or does this risk sentencing patients to a lifetime of symptom monitoring and long term disability?" Seriously does she really think that patients sit about 'monitoring symptoms' and this causes debility/disability. Good grief. Patients have no bloomin' choice but to face the full on frontal force of often overwhelming symptoms that keep them debited, banjaxed and poleaxed pretty much 24/7 from trying to do the basics of daily life - eating, drinking, washing and dressing (on a bloody good day). On what planet does this lady live?

"What of the researchers braving this often toxic academic terrain?"
It's only toxic if you value belief over science. Funnily enough lots of professionals, clinicians and yes, heaven forbid, even informed patients might firmly point out that you are barking up a silly tree. Terrible.

I vaguely recall she condescended to attend a Invest in ME conference in London way back. I got the impression that she was there under duress and had little inclination to hear or learn. It was a long time ago and I was v ill back then but that was my impression.

 

It's not odd at all. Many medical journals have beefed up news and other non-peer-reviewed sections on their sites that do not need to be written by doctors and specialists. BMJ.com has done this for years. The journals have either free-lance or contract or staff journalists to write these things. A free-lance journalist would clearly be getting paid. Someone like Jonathan would view writing an editorial as a means of disseminating his opinion.

I write free-lance journalism pieces having nothing to do with ME or CFS or MUS for the journal Health Affairs, and i get paid for those. But when I write opinion blog posts for the journal, which are considered academic products and fall under my Berkeley appointment, I don't get paid. I mean, the journal doesn't pay anyone for writing those--it's essentially considered part of your academic job to disseminate information about your field and your work.

 

I noted that sentence in particular. I haven't seen the evidence that this is what happens, nor does she provide it. What is this claim based on besides unproven assumptions?

 

This really is a weird and ignorant statement from Fiona.

My understanding of pacing is that you work within your capacity. If you discover, as I did after EBV at a point in time, that your capacity seems to be much as it used to be then surely pacing does not entail perpetuating disability. You get up and get back to activities. There is no need for 'symptom monitoring' if there aren't any symptoms any more.

The implication is that 'doing pacing' makes people disabled and in a way that not even the misplaced theories of the BPS people might explain. Pacing does not require inactivity such that there is persistent deconditioning for instance. It does not require any beliefs about illness persisting.

It would be so nice to have webcam videos of all these people gossiping with each other about all this. Has Fiona rubbed shoulders with Garner or Greenhalgh or whoever, I wonder.

 

This appears to be based on Garner's claim that he worried about every symptom when he tried to do pacing and got better when he stopped. The implication being that he would have been sick forever if he had not been saved from this perfidious pacing nonsense.

His lived experience is now worth more than that of 250000 ME patients.

 

We need a t-shirt with that on.

 

It could be sold in a suitable range of camouflage colours and patterns.

 

Women with endometriosis plus many other common gynaecological problems. Articles with titles like this one get published on the subject :

https://www.theguardian.com/comment...e-get-endometriosis-or-does-endo-make-you-mad

Edit : Missed out a word.

 

That piece from Fiona Godlee wasn't quite as bad as I thought it would be. However this idea that "pacing" involves focusing on symptoms more and setting out specifically to rest and do less, rather than just figuring out what your limits are, adjusting to them and prioritising activities you need or want to do, seems far too prevalent. The fact that that's what the editor in chief of the BMJ seems to believe is concerning.

I used to think that ME/CFS was so neglected just because people in power didn't know about it, but apparently many of them do know about it, they just believe things like that talking about how serious it is or taking the patients seriously will encourage things like "symptom focusing" or "monitoring". Usually medical conditions are neglected just because they're neglected, not because people actually believe paying attention to the illness and taking it seriously will make that illness worse. That makes the situation of ME/CFS quite unique.

 

It seems likely, to me, that those who think that pwME are capable of, or would choose to, use limited resources to 'monitor' symptoms in the way described have no idea what brain fog is.

For me at least that sort of thing would completely preclude doing anything else, quite literally.

I have been asked over the last year to do 'simple' things like monitor my blood glucose, or blood pressure, and on one occasion both. Apart from frequent mistakes, like forgetting to record things even when I do remember to take a reading, and forgetting where to record things even if I do manage to write them down, everything else gets let go. I just don't have the cognitive ability to add such a series of tasks as 'monitoring' and do the other things I need to. Baths, the small amount of housework I do, figuring out what to eat, keeping on top of keeping the kitchen operational, even straightening the bed - they all get lost and don't happen.

I know such a thing as taking a few readings, or taking a few notes on how you feel several times a day is a trivial task for a person without ME, but for me......it's not - it completely disrupts things and takes away any chance I have at doing what I have to to get through a day.

 

Symptom focusing is jargon commonly used in the disability insurance world. They believe that if the patient focuses on the symptoms, then rehab is going to be impeded. which brings the point that rehab focus is problematic when physicians do not know what’s wrong and how to fix it. While one can rehab a bad knee or a bad back, it is extremely challenging to do the same for a multi-systemic disease that is made worse by exercise.

 

This gets to the root of the problem. I think it stems from the movement in the early 1980's to demedicalise "illness", and leave only "disease" as the "proper" realm of medicine. This was the basis of the illness/disease dichotomy. Illness was only behaviour and was to be dealt with by education. Thus eliminate unnecessary testing and teach people to not concentrate on symptoms.

It's all nonsense, of course.

"Illness behaviour" was merely the forerunner of MUS. "Those in power" were well aware of the problems and the costs.

 

One of the reasons it is so hard for us to get our case heard is because ordinary people can't believe professionals could think like that. Literally, it has to be seen to be believed.

I used to think that all we needed was convincing science to change the minds of people in authority but nothing will ever be good enough to make then admit to being convinced.

The truth is that they use us as "proof" of their theories and the "stunning success" of their treatments in curing us is used to market their skills to other diseases. They have to paint us as a small group of vocal activists out of step with all those patients with ME that get cured and move on to have a healthy life.

We are hardwired to show pity and to minimise our own suffering (Oh, I'm fine really) so critically examining the evidence of those who claim to be victims feels wrong. The BPS use this to great effect to silence us.

The public feels that things must be really bad for a scientist like Sharpe to go public and admit he was not brave enough to carry on in the field because of the abuse he experienced. Yet at the same time he is now a hero for facing it and trying to make things better for other scientists entering this "toxic environment" to ease the suffering of deserving sick people.