Esther Crawley's contribution to #MEawarenessweek

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?)
 
Keela Too said:
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.
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I think someone did that and they didn't have the info. When it happened to us I had been warned that it could happen but I can't remember who warned me. (it was tweet that Andy quoted).
 
Alvin said:
Indeed, is there not mechanisms to hold physicians who harm patients accountable? :emoji_face_palm:
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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.
 
Skycloud said:
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.
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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.
 
Skycloud said:
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.
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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 :emoji_face_palm:
 
Skycloud said:
Parents of children with ME are less likely to complain because there's a power relationship and consequences which children are particulalry vulnerable to.
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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.
 
James Morris-Lent said:
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?
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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.
 
arewenearlythereyet said:
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.
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That's the point. Lots of implicit threats so it becomes a case of parents managing doctors and telling them what they want to hear.

James Morris-Lent said:
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.
Click to expand...

I do think it would be worth collecting anonymous accounts.
 
James Morris-Lent said:
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?
Click to expand...
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).
 
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