I think the kernel of the problem = the clinicians, their education, their false beliefs etc. Everything else follows from that.
If they respected ME/CFS as a diagnosis, the other labels would have been water off a duck's back. E.g. imagine if people with MS were coming to a dedicated clinic, also spouting "woo". Would they have shut down the clinic on the basis of the woo? I think not.
But in a number of cases it is, unfortunately.
It may be causing problems, but it may also be actually helping pwME. I needed to know about "POTS" to get help with severe OI symptoms - that help in my n=1 made a v. significant improvement for me. It may not have, I was lucky to land on something that helped. It also took 2yrs to find a Dr who I came across by chance. (I chose only that Dr to see, and researched as much as I could to be sure he wasn't going to be a gaslighter & psychologiser. I felt a massive risk of getting junk written on my medical file and second-guessed myself multiple times before finally booking an appointment.)
It's messy: I'm not convinced people aren't getting benefit from those labels while at the same time greatly risking being dismissed & gaslighted more, completely by chance depending on their luck seeing or avoiding a given medical professional.
N=1 again, but for me the knowledge of a different label led to concrete help. In many patient groups I've seen people describing experiencing similar concrete help - that made a difference to them & improved QOL, even if not a RCT. Of course there's the opposite risk also, of being harmed.
To my mind the only target for change is the medical profession - and a foundational aspect of it at that - & it's exceedingly unlikely as patients we can do much about it in this situation. I completely get JE's frustration & understand where he's coming from. But it boils down to "If only patients behaved themselves better & used the right labels, avoided the wrong ones etc etc etc, we might have some hope of being taken seriously by clinicians". I don't think that's an accurate framing. As said earlier, I strongly believe those clinicians used "woo" as an excuse for an attitude they'd already landed on much earlier.
Someone earlier described the dynamic as an abusive relationship where Drs hold all the power, and effectively that's what it is. I do see value in raising charities' and patients' awareness of this specific abuse dynamic so that patients can protect themselves from it if at all possible. But even knowing about it, it's not possible to protect yourself from it in all circumstances.
Your points here are very important
I think that not only medical profession needs to be targeted but further up the chain. Civil Servants are political and also vested interests. Anyone who sat through the Covid Enquiry would see that clearly.
The question we need to ask then is - where is the case studies and the data? Missing data impacts the evidence and our understanding. If you do not acknowledge the full picture and puzzle pieces of the patient, then you are going to misinform all those dealing with it.
This was the case with ME. You need all relevant diagnostic codes, they are not being used, so you get the wrong puzzle picture. Treatable symptoms that evolve through PEM get left untreated. If we list all the treatable conditions we would then we see the gapping hole in the understanding and treatment. There is a lot to unpick here.
MY concern and experence and the question that needs to be answered
What should a mother do in a consultation when a child presents with allergy, celiac disease Vit B12 deficiency, Vit D deficiency, iron deficiency has Hives described as (chicken skin), massive head aches, congested, aversion to smells, goes limp, unable to sit up and has PEM. none of these are unique or unusual when you look at the case studies of those with ME, most such as celiac, Vit B, D and anaemia are not looked for and dismissed anyhow. The mothers of such children are under suspicion when they walk through the door.
They do not have the understanding of medicine or what GPs expect of them, that is to say present with one solid condition. They have a list of symptoms that they should be able to discuss and not be threatened with.
They are first asked the question what do they feel is the problem. What should their answer be?
If they are lucky they will get a test/diagnosis of at least one of the issues presented but not the full picture, leading to further issues down the line, because the child does not get better on the understanding and GP with an interest does not understand the relevance of testing for the main core issues, or look for physical tell tale signs.
Remember PEM is little understood and unrecognised and mostly witnessed by the mothers? so is a red flag.
What should the mother do next after being dismissed as having a fussy child, which is the usual first response given by the GP and mostly you then have to go back repeatedly, which is another red flag. Three strikes and you get MDT meeting with no one ever meeting the child but information based only on those of the Sir Simon Stephens FII and the PACE trial.
In my experence diseases do not come in one little neat package, they are complex and if you look at each of the charities that deal with them you can see the links.
People and children in particular get validation when they use labels correctly but that is the problem the DRs do not know how to. For children labels are necessary and asked for by PIP and education.
The saddest thing of all is those symptoms left untreated those mothers that face the facts of living with those symptoms know they are harming their child. So what do we expect of the patient? Child or adult to keep quiet because Drs refuse to work the disease out or demand treating symptom in the hope that some form or life can be achieved? Or leave the symptoms untreated?
Lets just take one so call controversial part of this - Mast cell activation and PEM. If blotchy hives come up and 20 mins after antihistamine is given the hives go down, is it not the right of the mother to ask for the appropriate testing be done, given that Vit B12 and D deficiency is a strong indicator of mast cell. With this presentation there should be a baseline of tryptase levels, and a response level with close attention to medication and the effects.
What if the mother just stands back and does nothing, what happens then?
