Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

Thank you for your kind response.

MelbME said:
These clinicians are specialists, not GPs, so potential additive harm would be if parents took these results to the GP who then refer them away from the hospital/specialist system to someone that is a somatisation believer. This seems unlikely. At least I really hope that doesn't happen.
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I hops so as well, but I fear the worst because it has happened to so many people I know.
 
Hutan said:
The study was termed 'Understanding Chronic Fatigue Syndrome'. It asked me, the parent, questions such as 'Do you bring your child special treats or little gifts when he is very tired or in pain?' and 'Do you keep your child inside the house?'. I had forgotten how bad the questions were.
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Searching my collection of papers, it looks like these questions were taken from another scale called "Adult Responses to Children's Symptoms" (ARCS; Walker & Van Slyke, 2006):

arcs_qs.jpg
 
@MelbME thank you for sticking with this debate on the use of psychometric questionnaires and PROMS with ME. I think it is important that we explore the ideas in as much depth as possible.

We feel strongly about the risks of this approach, in terms of it’s inherent methodological flaws in research and clinical practice and in the historic harms to people with ME/CFS. The supporters of this approach see these tools in part as a valid evaluation approach and in part, as with the PACE apologists, claim it is the only way to measure ME/CFS which they see as a subjective phenomenon explicitly rejecting objective outcome measures.

Debates on this topic with invested researchers in the past here have not always resulted in any amicable consensus or even a basic agreement to disagree on specific propositions. So I think this and the related BASC thread will hopefully help us to clarify the key issues than need resolution.
 
MelbME said:
I don't have enough experience with these surveys and scales to speak negatively or positively. The picture being painted in this thread about them is quite poor though.
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It actually understates things, by a lot. It's a common experience. The outcomes have been so awful that simply listing them sounds completely over-the-top unbelievable. This is a big reason why things have been stagnant. They have been so awful for so long that moving away from the normal ways of doing things is impossible without breaking the suspension of disbelief about what actually happened here.

It all seems so innocent and neutral, but the outcome has been the destruction of millions of lives. As total as gulags. Mostly through simple questionnaires and very loose interpretation and adherence to the facts. In all the years I have had the misfortune of following this, one rule always applies: it's worse in context, and the more context you add, the worst it is.

We mostly don't add too much context precisely because it leads to defensive reactions, that it can't possibly be this intentionally awful. It's so much easier to believe in the official narratives that hide all the ugly details, that it's really just a bit of bureaucratic definition, as if millions of lives aren't decided by the outcome.

Frankly it's bad enough that in a sane world, psychosocial questionnaires like this would simply be banned for this use. With prejudice. But we do not live in a sane world, we live in bizarro world instead and so here we are, nothing has changed in decades.
 
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Hutan said:
There's enough 'real disease' stuff in there to leave the prospective patient hopeful, and even the funders wanting to save money can send the person off to Mayo in good conscience. For sure, they sort out cancers, there's a nice video of that. But, there's still that 'we'll deal with the frequent claimant, the overuse'. I think I'd be willing to bet that there is a fair amount of functional neurological disorder diagnoses done when Mayo have gone through a few tests, clearly drawing a line under the patient's 'diagnostic odyssey'.
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Thanks for looking for an example! There could well be some FND in there, but this sounds similar to a federal program where they take people in with odd presentations and try to figure out what's going on pathophysiologically--just like they re-identified some of the possible participants in the phenotype sample with other conditions.

Maybe it's true that all clinicians everywhere know and understand "complex" as meaning, wink/wink, functional/psychosomatic. I would assume all the somatization fans like Wallach use it that way because that's how they think of everything. But I guess it's just not my personal observation from non-fans of somatization among U.S. clinicians I know. Just like I know many in public health and medical fields who use "biopsychosocial" as it should be used, not as the UK and Scandinavians use it. But I'll ask around. Maybe I'm not that observant.

Note from the moderators: the subsequent discussion about the Biopsychosocial Model has been moved to this thread:
The biopsychosocial model
 
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Thanks for writing so powerfully @Utsikt.

Utsikt said:
If you or your research team ask these questions of the parents, you can and will do lasting damage to the children. Most parents are not Hutan - they don’t know any better. I didn’t either before I got sick. The questions will negatively influence the GP, the parents and their child. It is unethical and it’s harmfull.
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It's really hard for parents to understand.

I had the benefit ( a costly benefit, but one nevertheless) of developing ME/CFS at exactly the same time as both my son and daughter. At the time we became sick, we were all mentally well and enjoying life. My daughter recovered over a couple of years, naturally, without doing any of the BPS interventions, so that gave me another point of reference. It has surely been many many times easier for me to reject the BPS nonsense than it would be for most parents.

And even so, when this specific project that Chris is associated with came up, I thought it was better than most other projects competing for funding at that time. I probably still do. At the time when it was still a proposal, that is when I first said to people 'it seems that giving up our psychological data is the price we have to pay for a decent biological study'. And, even so, at that time, I supported the project and promoted it.

Even though my family had been harmed by the same psychological researchers, I hoped that maybe they were different now. I did not know that a survey that assesses somatisation would be given to the parents of the young people.

Would I support a project that makes such demands of its participants now? No. Would I ask much much harder questions of any ME/CFS project before supporting it? Yes. Would I, at this time, support any new ME/CFS study involving young people? Probably not.

But, I too, even with all the experiences that should have made me more aware, have made mistakes in relation to knowing who to trust, what to support and how doggedly to ask questions.
 
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Hutan said:
But, I too, even with all the experiences that should have made me more aware, have made mistakes in relation to knowing who to trust, what to support and how doggedly to ask questions.
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Joining this forum has been the most humbling week of my life for this exact reason.

I just spoke to my dad. He said «you don’t have the all of the answers». He firmly believes that everyone are a bit correct. So we should listen to everyone.

He refuses to believe that most people are clueless, and the worst people are those who believe that they know something (BPS or quack «biomed» experts).

I try to tell them that I know what I need, but that’s not good enough. We need healthcare workers to determine my needs.

This could have been avoided if my first GP gave me strict instructions to pace, rest and to listen to my body. That’s the complete opposite of what the survey has done.
 
rvallee said:
It actually understates things, by a lot. It's a common experience. The outcomes have been so awful that simply listing them sounds completely over-the-top unbelievable. This is a big reason why things have been stagnant. They have been so awful for so long that moving away from the normal ways of doing things is impossible without breaking the suspension of disbelief about what actually happened here.

It all seems so innocent and neutral, but the outcome has been the destruction of millions of lives. As total as gulags. Mostly through simple questionnaires and very loose interpretation and adherence to the facts. In all the years I have had the misfortune of following this, one rule always applies: it's worse in context, and the more context you add, the worst it is.

We mostly don't add too much context precisely because it leads to defensive reactions, that it can't possibly be this intentionally awful. It's so much easier to believe in the official narratives that hide all the ugly details, that it's really just a bit of bureaucratic definition, as if millions of lives aren't decided by the outcome.

Frankly it's bad enough that in a sane world, psychosocial questionnaires like this would simply be banned for this use. With prejudice. But we do not live in a sane world, we live in bizarro world instead and so here we are, nothing has changed in decades.
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Worth repeating.

The real situation is so bad and deeply entrenched that is difficult to get those unfamiliar, and even some familiar, with it to understand and believe it really is that bad. Nobody wants to face up to the truth that things really can go that far off the rails, inflict that much appalling damage and cruelty, and that the perpetrators are not only not being held to account for it and they and their ideas being removed from power, they are instead stubbornly refusing to admit anything and are still being protected and rewarded for it, still have a powerful seat at the table and plenty of funding and career opportunities, and patients are still being forced to pay the real price for it all, and get the blame for it all for daring to question their betters.

All because the medical profession cannot properly police itself and maintain the minimum of technical and ethical standards. The cowardice and indifference is utterly appalling, and history is going to deliver a very harsh judgement upon the profession over this.

A Kafkaesque nightmare for patients barely begins to describe it.
 
I think it is worth giving some thought to the possible bias created in the omics sampling due to what I understand is the requirement for the participants to remain under the care of the hospital paediatricians/neuropsych people. Based on my experience, admittedly a while back, people who were skeptical of the treatments offered by these people are likely to have not gone to the clinic in the first place, or given up and stopped attending fairly quickly. Despite the lure of contributing to the omics study, I expect that there will have been some families put off by the psych surveys too.

So, is it possible that the families remaining in the study are more likely to believe that the illness is partly or wholly due to psychological factors, or factors that can be altered by thinking better? Might they have been influenced in this thinking by the young person having a history of mental illness? Is it possible that the young people who are better able to cope with GET or versions of it that sound better such as 'pacing up' are the ones that have stayed in the programme, while the ones with obvious PEM reactions have given up?

Frankly, even just the sheer effort of going to the fatigue clinic at the Royal Childrens Hospital is daunting. When my son went, it was a long trek from the carpark to the Fatigue Clinic (in the Mental Health Department). And then they had you sitting in the waiting room for a long time. Maybe things are different, but I think that, combined with it being clear that the doctors could not offer any real help, would put off a lot of the families with children with anything more than a mild severity level.

I don't know that this is the case of course, just throwing it out there as a possibility - that the tying of the clinical care to the omics study will have selected for particular sorts of participants, and possibly not the ones with the clearest ME/CFS signal.
 
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