Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

I think it does show something. I think the "effort" process demonstrates an unfortunate bias embedded in the study. I cannot figure out what it was included. Do you see this in cancer research?

I think it should not have been there. I am offended by its presence. I think the patient community is hurt by it. By its mere presence it invites misinterpretation. This study was supposed to clarify and educate, to help liberate us from prejudice.

 

I agree. I think you will see this if Walitt does a study of cancer-related fatigue.

From Wang & Walitt's 2015 chemo-brain paper:

 

Further re Walitt and cancer-related fatigue:

In the 2015 chemo-brain paper http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750385/, Wang, Walitt et al 2015 cite just two studies on chronic fatigue syndrome; one is Holmes’ paper, the other is one by Ocon. The Holmes et al one is the 1988 paper from which the name chronic fatigue syndrome originated – not our finest hour. (http://www.ncf-net.org/patents/pdf/Holmes_Definition.pdf) Here’s a quote from Ocon’s paper which will give you an idea of where Ocon is coming from:

(Full Ocon paper at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3617392/ )

 

Sharon Cohen has shared a letter on Twitter sent to Dr Koroshetz about regretting her decision to participate in the study:

ETA: She has participated in other NIH studies, not this one. My misunderstanding.

 

Me too, repetitive movements are awful, and this was evident in the repeated grip tests in this study where the patients' force declined rapidly. I would have started with easy and then alternated between easy and hard not because they were easy and hard but because one would give my index finger/right side a break and the other would give my little finger/left side a break. The money would mean nothing to me. Make it a mobility scooter and we'll talk.

 

The same the way they set up the test of people's ability to speak Polish for 20 minutes.

They didn't even entertain the idea, because it would be inappropriate, pointless, and they wouldn't understand it anyway.

 

Well thanks for those who made a deeper analysis in the BS effort task. It's really holding up so far that this study is worse in context, and the more context you add the worse it is.

All I can say about the effort task, beyond being completely inappropriate here, is that by comparison it makes the Stanford prison experiment look like a better study of response to authority, and the SPE was not a valid study of response to authority. Being present in what should have been a seminal study of an illness ruining millions of lives, it's absurd. Commentary based on this single task featuring prominently in the abstract and discussion is simply outrageous. It beclowns the entire study, in my opinion. No serious person would have ever accepted this to be anywhere in the text if they took the job seriously. And that the reviewers didn't see enough wrong with it to demand it be taken out is yet another example of just how thoroughly broken peer review is.

There is an extremely insulting element to making this a study of 'reward' when the rewards are completely tokenistic, have no actual value. People with ME have to make choices to feed themselves, bathe themselves and other very hard choices on a daily basis. And that's after having had to make the choices to stop working, to end careers, to deal with the loss of family, spouses and our entire real-life social network and the deep financial losses that can amount in the millions over a lifetime. The idea that points on a computer, or maybe $5?, it's not even clear what the rewards are, compare to this isn't just a complete insult on the patients, it is frankly insulting the intelligence of the researchers.

The views represented here are comparable to the worst you can find in so-called "scientific racism" and other hateful ideologues that see a group of people as so beneath consideration that they would find such ridiculous scenarios valid representations of our lives. They may not see us as savages the same way deep racists do, but their views of us definitely compare in how contemptuous they are of our intelligence, our worth as human beings and our right to be respected and treated with basic dignity.

If there had been some good science along with this, it could have worked out. But the lack of a serious attempt at researching this while at the same time featuring this complete clown nonsense makes this study as close to a deliberate insult as it could get. In some ways it's actually worse than PACE because despite supposedly being a serious and deep study of a serious disease, the authors chose to prominently display a ridiculous analysis of a single 15 minute task of zero validity in a way that seems crafted to be quotable, and it sure has. The NIH didn't just let us down here, they dropped another anchor on our heads. For shame.

 

It's the same BS as the depression questionnaires.

You feel tired? 5 points.
You have stomach symptoms and a headache? Another 5 points.
You don't feel hopeful about the future, stuck in bed with an untreatable illness that gets mocked by all the doctors? Yep, another 5 points.
Sleep issues and difficulty concentrating? Another 5 points.

Result: 20/30, the cutoff is 18 so congratulations, you have major depressive disorder!

These tests are meant to be used only when you already have a very strong suspicion of a mood disorder. Otherwise, almost anyone with a severe physical illness would test positive.

I can't believe they got away with this kind of BS yet again.

 

edited for clarity
I think that at an online conference a couple of years ago, Workwell said they had data on about 400 subjects. I don’t understand why they haven’t published an analysis of al their data, which would go a long way to clarify the significance of these studies. At that conference, Betsy Keller presented a few narratives but illustrated them with small sets of data. I simply don’t get it.

We don’t even know if every individual has a significantly lower ventilatory threshold on day two. However, we do know that all of them had PEM brought on by exertion way below the level of everyday life.

 

Indeed. I consider the material written from the bps ideology scientific disablism: it makes prejudiced harmful views seem acceptable and science-supported.

Medicine has a history of wrapping maliciously prejudiced views and patriarchal/conservative preferences in science-speak (and psychiatry has floated on it), and it is still happening - bps ideology has re-introduced it on fertile ground and normalised it as a common thing. One on my "to write on" list.

In this case I guess the normalization made it possible for this "effort preference" junk to get published.

 

I know right?

 

I know!... i thought when reading it that i would have chosen 'none of the above' if faced with choices between tasks which would have caused me significant problems, for such trifling reward.

The comparison with HVs for a reward based task to determine effort 'preference' is absurd, since HV will receive no punishment/negative consequence for doing it, they will have no downside to doing any of it. How can you possibly make a comparison of preferences - HVs are not a valid control group for such a task.

You may as well offer a bunch of people with (non fatal) peanut allergy a choice between foods with no traces of nuts, and foods which might have a trace of nuts, & offer them some poxy utterly trivial reward for eating them.
And then, as a control to compare them to, offer the same choices to people without nut allergy.
And then call that a comparison.

I can just imagine their response 'ah but you dont have allergy, you only think you have'.... we may not have allergy but we do have an abnormal response to activity. Isnt that what you're supposed to be investigating?! I mean Duh!... Its not that a person with ME will always think 'oh i cant possibly push a button that many times. Its that even if we can push it that many times, the payback for doing so will be a problem.

That's the problem you're supposed to be investigating surely? not making utterly specious comparisons between people who have no issues after activity & those who do.

And thats without all the other issues with it.
Its shocking.

I'm afraid I agree, i'm devastated by it.
This is going to affect everything... if its now supposedly biologically proven that we only 'think' we cant do things, or only 'think' we will pay a price for doing them, then the carer who is asked to fetch something at the end of a long hard day, when it appears the caree could do it for themselves, will get shirty and may not do it, leading to possibly a major PEM episode for the caree.

Its the doctors receptionist who gets angry & wont make accommodations because 'you can do it there is nothing wrong with your muscles we cant accommodate effort preference', & the GP that wont make a home visit.

It's the ward sister/Matron in the hosptial who wont put the ME patient in a side room or near to the bathroom, because, well "it'll do them good to do some exercise walking up the corridor their disability is caused by effort preference that leads to deconditioning, they need to be encouraged to do more... "get up off the floor you silly woman, stop making such a fuss, you are perfectly capable of walking to the loo if you just push yourself, I cant be pushing you in a chair, I've got patients who are actually ill to look after".

Its the plumber who wont prioritise your job because when you say that if your upstairs toilet isnt working you will have to sleep on the settee downstairs because theres no way you can manage the stairs during the night - because he's read about the "mismatch" in the daily mail.

Its the parent who says 'come on you can do a bit more, of course you must go to soccer practise, stop attention seeking!'.

Its the continuing battle against derision, abuse, and neglect that has just be reinforced & made harder. I pity anyone who has to have a benefits assessment after this.... "Claimant says is unable to _____ but science has proven this is a mismatch between what they think they can do and what they actually can do, therefore i assess them as being able to do it without difficulty".... claim denied... destitution ensues.

Its just everywhere, in everything, a massive battle. Its having to explain to every health professional you see why you're in a wheelchair when all you have is "fatigue" - ''you need to get out of that chair its been proven now that deconditioning is the cause of your disability!''

It's like going back to 2011

Despair

Edited to add: i know everyone on S4 knows that, but i decided to get it off my chest anyway because there will no doubt be people reading who dont undersand why we are so up in arms about it all... people who think something akin to "there's no pleasing these people we just proved the biological basis for CFS, you should be thrilled!" We are not thrilled by poor science.

Edited - minor edits for clarity in 1st paragraph, & to change words written in Upper case, as they seem like i am yelling.

 

The context:

https://twitter.com/user/status/1761570580724167152

 

Re : Effort Preference.

I live my life trying to exert as little effort as possible on minor but essential things so that I am able very occasionally to choose to do something that takes effort but will bring me pleasure. I would always choose the easier option now that ME drives my life. I have no other choice if I ever want to do something I enjoy.

That is my effort preference in order to avoid PEM. As a result I was able to go for a short wheelchair walk on Friday followed by a rare lunch with Mr B in a quiet, well researched restaurant.(quiet, space between tables, supportive seating). I thank those who spent Friday digging into this hopeless study costing a fortune. We should not cooperate with researchers who have shown us that their beliefs are totally incompatible with an understanding of ME.

 

From Sharon Cohen, who identifies herself as a participant:

 

actually, she says she wasn't in that study but was in 4 other NIH studies. She regrets participating in those studies because of the results of this study--she feels she participated in the other studies under false pretenses because she didn't realize the agenda from this one.

 

Thank you for the clarification! I've added an edit to the post.

 

Agreed. And it was an anchor we saw coming given what Walitt has published about all fatigue being somatoform, but boy, when it lands on your head, it's even heavier.

Exactly. Daft little games are not somewhere we can squander energy, even if we think we're well able for them.

I agree. I think it could send a strong message if ME/CFS societies worldwide announced funding drives/available funding for biomedical research/replication of the catechol or immune findings of this study, and specifically stated that they will not fund research based on a model of ME/CFS as a somatoform/psychosomatic condition.

I also think that the Long COVID community needs to be made aware (and I know some are already) of what will come of their Walitt/Nath study. That some useful findings may well emerge in the nervous and immune systems, but that they will be handed down the same somatoform explanation that Walitt bestows on all with fatigue, whether it comes with ME/CFS, FM, cancer, rheumatoid arthritis, or whatever.

You are so so right.

 

BMI was no different between the two cohorts according to supplementary data 5:
mean (SD) BMI of HVs: 25.8 (3.4) ME/CFS: 25.9 (5.3) p-value 0.9
Was there a subset for this DOPA finding with higher mean BMI?