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

Thanks for writing so powerfully @Utsikt.

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.

 

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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The biopsychosocial model
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