Medscape: If It Feels Like Fibromyalgia? 'It Probably Is' - Fibro article linked to from MEA facebook

I had a gait problem which has been partially fixed. It took brain surgery to improve it. No amount of exercise would have done any good. I just thank my lucky stars that I actually got treated when I did because a year or so later I would have been told my problem was caused by my imagination, I just wasn't trying hard enough, and the solution was exercise.

 

I am not sure that tests for IgE are reliable enough to make that sort of negative statement. You would need to be sure you knew the precise antigen and have a good IgE assay for it. My understanding is that allergy tests are pretty unreliable.

But if there is no evidence for an allergic response then why invoke mast cells?
I am not sure what symptoms are being put down to MCAS but if they are not classic allergic symptoms like hives or angioedema then maybe they have nothing to do with mast cells.

Diagnostic voids are everywhere in the sense that a lot of people have symptoms we do not have clear explanations for. That has to be built in to any approach to any sort of clinical problem.

 

I'm surprised nobody has pointed out the absolutely galling patient-blaming:

(Emphasis mine)

 

yep that's pretty shocking back-covering to offer the same nonsense that didn't work again leaving someone in a doom-loop of nothing will make them investigated, even whatever they dump them into and then offer clearly not working.

 

I have just read this again. Does it not underline the issue with BPS and rehab/physio these same people insisting on not using objective measures - and yet ... any time the answer is something they didn't like from the patient it is being dismissed as 'they just weren't thinking right'.

Totally undermines all research or science claims?! Because if the leading questions still get a wrong answer it isn't counted, and if even then the answer isn't what they want it is ignored. ANd even if it isn't significant then, it's treated as if it is an edict anyway so patient's feedback is ignored.

I mean the utter paternalism/misogyny (insert other options as relevant) of it. It really underlines how it needs to be outlawed and removed from any HCPs - but particularly physios, who have NO training OR responsibility for psychology or mental health - and re-categorised as what it is: misogyny and any comment suggesting 'a bit mad' should be seen as the really damaging power move that it is. ie an attempt to silence.

And should have penalties to the individual doing it that are in line in magnitude to the potential harm done: ie someone might then be unable to access healthcare for their condition ever again, and have their being listened to removed from them - so very, very serious implications.

Nevermind it actively been done meaning harm reported is ignored in order to do the same thing again. That is the definition of callous and unprofessional.

The fact the profession is allowed to use this as is if it isn't some huge power they shouldn't have as a weapon, and they pretend it isn't being used as a weapon to gerrymander results and feedback, and then the huge damage it does isn't being acknowledged I find outrageous. It is worse, like when someone is 'managed out' at work instead of having to tick all the boxes to fire them, than going through the correct route - which has protections for a reason (even if those probably are flawed too by hierarchy) - this is being used to undermine and sidestep those protections that are alongside such serious accusations.

And it's seeping into workplaces where some orrible misogynist boss can just infer some woman is hysterical again, like its the 70s except women are doing it this time too, just because they don't like their face or want to man not ball their feedback or cover the injury done by overwork or bad management. SO whilst I'd hope someone would be sacked for being racist, certainly outright, in most places, and it affecting their treatment, this tactic is allowed to be used all the time as a way of being bigoted in a more impactful way without having to be asked said questions.