Esther Crawley's contribution to #MEawarenessweek

It's a question I've asked myself many times when I've read what some doctors have actively done that hurts PWME.

 

I'm not familiar with how to do FOI requests, but it might be time to ask:

How many patients entering the Bath clinic with ME, ME/CFS, CFS/ME or CFS as their diagnosis on entry, get re-diagnosed with other conditions? And of those, how many are therefore declared free of their initial diagnosis.

Also it might be interesting to ask for a break-down on how many patients are re-diagnosed to each of the alternative diagnoses given.

Might need to specify a time scale for the entry cohort.
eg of patients entering the clinic between 1st Jan 2012 and 31st December 2016 - thus giving a 5 year period, and time for the re-dx to happen. (ie including 2017 might mean the re-dx hadn't happened yet?)

 

Nor am I, but would think the wording needs to presume attempts to avoid giving a usefully sane response.

 

Wonder would a MP be able to get further??

 

Given the recent response of ' the information is not available' to a recent question in Parliament, I doubt it.

 

Disgusting. I would say it is vital information, and no doubt the figures are "not available" simply because they know it would be a scandal!

 

Is I think code for "we do not wish to make it available"

 

If you were in California, you’d make a complaint to the Medical Board of California. They do take complaints seriously and regularly discipline physicians. Most of their twitter feed is about actions taken against doctors.

 

In the UK complaints go to the General Medical Council (GMC). Currently, there is a complaint led by Dr Sarah Myhill to the GMC with supporting complaints from patients about the PACE trial investigators and harms from GET.

Parents of children with ME are less likely to complain because there's a power relationship and consequences which children are particulalry vulnerable to.

 

I was going to say something similar. I would imagine that once parents have “escaped” from a practitioner doing harm they would feel very reluctant to go anywhere near “the authorities” or want to make themselves a potential target for further abuse.

I imagine there are a lot of people trying to keep below the radar for their own protection.

This is what my parents did once it became apparent that there was a risk that I may be put into some kind of special unit and removed from school (for another condition ...before I had ME/CFS). It was one particular teacher who was very adamant that ‘it wasn’t her job to teach people like me”. This was despite me being one of the brightest and docile members of the class.

 

Indeed, i can understand this
How pathetic that we live in societies where perpetrators are protected from their actions by the vagaries of the medical and legal system

 

Would there be any value in collecting anonymous accounts?

These stories where families are coerced under threat of their child being taken away really inflame my American sensibilities - we have all sorts of bullshit here but not this kind. I'm sure they would speak powerfully to just about any parent anywhere, as well.

 

Sadly, we have our own versions of this
https://www.huffingtonpost.com/cristy-balcells/first-do-no-harm-how-we-f_b_4843997.html

 

Infuriating and disgusting.
I can't help but note that it tends to be religious, conservative, and libertarian groups in the States that get off their asses to fight this sort of bullshit. Is that the case at all in the UK?

 

No we all think it’s shit

 

I think in Justina's case it was bc her family leaned in those directions.
But yes, it seems libertarian/far right people are bizarrely more motivated about interrupting state abuse of power than so-called progressives, it's confounding. It's a shame when civil and human rights fall victim to politics and fake partisanship.

 

I think @dave30th may be on the case ?

 

Yes, I've noticed that too.

And the doctors who have harmed us the most - the BPS acolytes - tend to be left-leaning.

Actually, the harmful doctors/researchers/professionals seem to fall into two categories: 1) conservative and mysogynistic, dismissive of MECFS as a modern social ill (think Edward Shorter); and 2) left-leaning and highly paternalistic, believing we are all in need of correction (think BPS acolytes).