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

That would be unfortunate indeed and I still feel they aren't harmful researchers. They see it as a physical illness, that's why they publish on cognition and MRI.

They are also aware that having a disease with little answer or help comes with a layer of stressors that they can help with. If you can't fix the disease you can at least try to improve life quality and I think that's their care strategy.

 

I think I already answered this at the beginning but I can clarify some things around the report that I miscommunicated earlier.

The BASC is a scale used in all manner of research on paediatric patients: cancer, stroke, etc.
It wasn't targeted for ME/CFS, it was just used as a standardized approach to research on young people.

The research team we collaborate with do not think this disease is to do with somatisation or treat patients based on this.

The use would be compare to patient populations with other diseases. To point to severity of impact, etc.

Yes to clarify, I didn't explain it well with the report on the weekend, I was hastily replying.

To clarify:
The child does cognitive tests
The parent fills the BASC
The neuropsych provides a report from this to the parent (we are not privy to the report given it's private), the report is provided because anytime we do a test in a study that is clinical then we try to provide an outcome back to patients/guardians. Most of our data isn't clinical and we can't provide it back to patients even if we think it's important, which we find difficult.

The report is provided to the parent, the parent can share with the child or GP if they choose.

 

Is the report like a personalized letter for each child explaining the results? Or is it a standard fill in the blank format like: "Sue scored a 4 for the fatigue scale. This scale represents ..."

If the latter, maybe if you're able to, you could share the format that parents will be getting?

 

I don't know this history but that doesn't reflect on the management of the current trial we are conducting.

I do think people learn as well. Researchers and patients are all learning about this disease. I think it's promising to neuropsych researchers move towards a biological context for the disease.

Yes clinicians do harm everyday, to all manner of patients. Whether they don't act or do act, they can be responsible for harm. I'm not a clinician but I think it's a job where they are an instrument for net good but ultimately all have a trail of people harmed.

I think the clinicians that are problematic are the ones that don't change in the face of negative feedback around their approach, right?

 

I don't see the reports, I just get to see the data from the scales eventually. I can ask next time we meet though.

 

I think if they were interested in somatisation then they would have suggested one of the many somatisation scales?

The somatisation believers suggest that 5-7% of all people have somatisation disorders at some point. There's many more extensive "tests" for it. It's a different reality out their from some perspectives.

I don't have a concern that the intent is to paint ME/CFS patients as somatisation but I am concerned that you think these questions are still causing harm. That was not something we thought was going to be harmful, we mostly worry about the harm we cause from physical aspects of the projects we do.

 

I think your concerns are incredibly serious. It really worries me how simple it can be to do actual damage to people's lives and children's futures despite the best of intentions.

 

@MelbME you are doing a great job of standing top for your corner. And you are clearly taking note of what people say - good on you.

I would just make the comment that when I was a physician studying RA and other 'biomedical processes' I had no idea about what went on when it came to the psychology side. Other than that early on I upset my colleagues in saying, on instinct, that I did not want my patients to be recruited for psychological studies.

When I got interest in ME/CFS I started looking at the evidence base for the psychological stuff and still continue to be stepwise more and more horrified how baseless the whole thing is and how manipulative and interfering. My own family experience with psychologists had been a disaster but I had hoped this was atypical.

So to go to the quote from you, I would say that we have no evidence that scales like this are ever useful or even that there are any 'right hands' out there, terrifying as it may seem. The entire paediatric profession has been persuaded to buy in to stuff with no scientific or evidence base. These 'standardised tools' are just a pretence at 'rigour' to justify the made up stuff that care is based on. Ethics committees should not be asking for them.

What do we do about? I guess what you are doing - learn as we go along. Keep at it.

 

Almost certainly people like Wallit and Nath will use it this way.

I am pretty sure that physicians both sides of the Atlantic are very aware that the term 'complex' was deliberately devised to have two meanings, one for colleagues and one for patients, just like 'functional'.

The communication situation the states is weighted differently because most of the time it is assumed that patients are hearing what you are saying. In the UK doctors have happily discussed things as if patients were pet dogs. Just occasionally some NIH types are sufficiently confident in their intellectual superiority to slip in to English ways! Bt most of the time US physicians use complex for the benefit of patients.

However, the bottom line is that either meaning is in effect a matter of marketing. Complex is used to market care and research to patients on the basis that 'we are taking you really seriously'. But for the known complex diseases like diabetes, RA, multiple sclerosis, we never use the term because the seriousness is assumed. So even when complex is used for patients it has an implication of a paternalistic attitude that aims to reassure dumb patient pets that they are getting a nice bone.

Use of complex with patients is also a way of ignoring their specific experiences and symptoms and shifting the agenda to imagined pathology that justifies that $10,000 bone. The charities do it as well.

When ME/CFS research and care come of age the term complex will be seen as an encumbrance and an obfuscation, on all fronts.

 

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.

I am taking note of what people say, I haven't explicitly stated that here but I'll certainly have more consideration of some of the value of scales used in general. I've primarily been thinking of patient burden, so these scales seemed fine at the outset as the patient doesn't need to do anything for them. In future I will try identify survey harm earlier.

I will say though that I wouldn't have chosen to collaborate with psych researchers if I thought they considered it a somatisation disease. We have plenty of them in Australia. In this instance it has been good to learn from different types of researchers. Psychology certainly has its place but like most fields perhaps they have grown into spaces for growing sake rather than real need.

 

Thank you for your patience with all of us, @MelbME.

I want to describe a very, very common experience for ME/CFS or LC patients.

I’m 29, bedbound and I live with my parents. I’ve had a therapist for three years because being severly ill is hard.
She describes my mental health as robust and she has sent a writren statement to my GP.

Every single healthcare worker I’ve talked to, except for a former ME/CFS researcher, have asked about my mental health. Every single one.

It would be fine that they asked to make sure that I’m doing okay, but all of them have assumed that I’m not. When I was unable to sleep for weeks, my GP put me on meds to calm my thoughts, even though I stated very clearly that I don’t have thoughts that keep me up. This caused me to go additional weeks without sleep, and I developed lasting visual disturbances due to what’s most likely neurological damage.

My parents still believe to some degree that I am negatively affected by my mental health. Because why would everyone ask about it if it wasn’t important? I’ve had so many discussions with them about it and I’ve experienced lasting deterioration to my health because of it.

The worst part about being sick is that my parents don’t understand me. I’m living dead. I’ve lost my life and everything in it. I don’t have much hope for my own future. But that doesn’t come close to how soul shattering it has been to feel so incredibly alone, mistrusted and misunderstood. Can you imagine being completely dependent on someone to survive, yet look forward to the days that they are not home? Now imagine that those are the people that you love the most.

I’m not sure that I will ever be able to fix my relationship with my parents. They love me and they want to help me in any way they can, but they don’t understand that they are causing lasting harm. I’m not even sure I want to tell them everything, because it would destroy them to know what they’ve done when they tried to help. But it isn’t their fault. This is 100 % on the healthcare workers (and the BPS lobby).

This is what happens when you let psych anywhere near ME/CFS. This is common. It happens because the psychosomatic trends have caused everyone in our society to believe the mind-body bullshit.

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.

In my opinion, the neuropsych part of this study should be stopped. It’s not worth the risk, and the benefit of your research doesn’t outweigh the damage or cost of theirs. It’s unethical to enable this to happen.

I have so many friends with the same experiences. I’m not alone in this.

This comment can be shared with Sarah and her team.

 

I think I can understand what it's like to not be understood by parents and I've had bouts of mental health issues that at their worst kept me practically housebound for half a year. That's about the extent I can empathize but what you describe is well beyond that and I really don't know what it's like to live in your shoes. I'm sorry you've been limited in this life but also glad you found this community here.

The neuropsych part of this study is completed, we finish up recruitment for the in-clinic visits next week and are only waiting upon longitudinal omics collections.

I should also point out that all the patients in this trial are within the same system of care for rehabilitation that the RCH supplies. None of the patients ended up being brought in from non-RCH connected clinicians, they are already seen by the same clinicians that are across these surveys. 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.

I think the main outcomes from this discussion is to look out for any suspect wording in publications that might inappropriately validate these theories and to not ask these questions in future. I will discuss some of what has been said with the team at RCH too.