ME/CFS Medical Education Campaign UK - UK website and blog by Katie Johnstone

Have set this up in its own thread because although it initially seemed to be on US it is UK based.

https://mecfs-med-ed.org/about-us/

 

medical education, NHS
The NHS must provide mandatory training on ME/CFS – our submission to the APPG
3rd May 2023 Katie Johnstone

 

Not sure who is behind this group, as the website doesn't give any details. Could be Nina Muirhead, but the last I heard she was still in a bad relapse and wasn't able to do much advocacy.

 

Odd, isn't it? I do understand it, given the history and the fact that those running it might be ill and have no capacity for direct engagement, but it still feels ... unusual.

 

Katie Johnstone has a substack https://mecfs.substack.com/ and Twitter account https://twitter.com/SockFoam

 

I think Katie is probably running the campaign.

 

I can't see any evidence that this is other than an individual effort using material authored by Nina Muirhead which has been submitted to various authentication bodies for the CPD certificate. How diligent the authentification is I've no idea, but these are fee based services. No actual need for NHS or Gov involvement at any point.

 

The link is on this page: https://mecfs-med-ed.org/about-us/ right hand side = Free 1-hour CPD course The module seems to have been available since 2020 - at least according to the reviews at the bottom of the StudyPRN page.

 

As far as I am aware this has nothing to do with the Javid initiative which involves working groups of which I am a member.

I am doubtful that this way of presenting things is going to help. We are not told who in involved which means that to the medical profession it will simply look like an anonymous pressure group.

The mission statement says:

• Every undergraduate medical student in the UK must receive evidence-based training on ME/CFS such that they are fully prepared to diagnose and treat ME/CFS patients in line with the NICE guidelines.

• Every doctor working for the NHS must undertake mandatory training on ME/CFS such that they are fully prepared to diagnose and treat ME/CFS patients in line with the NICE guidelines.

But this is totally unrealistic. ME is of similar prevalence to RA, or MS and much less common than macular degeneration or otitis media. The great majority of NHS doctors do not train to diagnose or treat these. An obstetrician does not expect to diagnose otitis media or rheumatoid arthritis.

It is very appropriate that general practitioners and physicians, specifically, should be aware of the diagnosis. But even there only a very few are likely to be involved in treatment - especially as there isn't really any.

Why should doctor undertake mandatory training in ME rather than a hundred other things?

In many ways what is needed is for the vast majority of NHS doctors to understand that they are not competent, and are never likely to be competent, to diagnose and treat ME and should collectively ensure that some specialists are trained to do so. For GPs to think that they know what to do seems to me to be a nonsense. Managing a condition like ME requires people with specialised experience in the condition.

I am afraid that I get the impression that the author(s) have no real idea what it is they want.

 

I agree that every doctor shouldnt be able to dx ME/CFS, thats absurd & actually impossible anyway. But i wonder if perhaps what they want (certainly what I wish were the case), is for every Dr/health professional to be re-educated that its not imaginary/malingering/conversion disorder. So that when we run into them getting treatment for other things we are treated with the same attitude as someone with say an MS or RA label, rather than the current state of affairs, where they all think they DO know all about it, & therefore at best we are treated with a barely hidden eye roll, & at worst with outright derision & abuse. They wouldnt dream of doing avoidable things which made someone's MS worse, but they seem to actively enjoy not giving a monkey's about us.

If we are facing major surgery for something else, we shouldnt be more scared of the way we are going to be abused by nurses/doctors/HCAs while in hospital, than we are of having he actual surgery, for example.

 

Or when you go to your primary care physician who concludes you are depressed when you are not.

 

or when you actually are depressed, dangerously so, but you darent tell your GP & ask for help, because if you do from then on all your Me/CFS symptoms (that you've had for 20 yrs) will be suddenly reframed as depression.

in my opinion its accurate awareness of what ME/CFS actually is & what it involves for the patient (ie QOL impact & especially that ME/CFS equals CF equals TATT) that is needed, not the ability to Dx/treat it.

But its easy to crit from here, i didnt start a campaign, so well done to whomever did

 

I would not be too happy if certain individuals were involved in teaching said course, for instance, Clare Gerada, or Trudie Chalder or any of their contacts. Who is presenting the information and what are their conflicts of interests matter a lot.

 

I can't access Linkedin but the brief bit I can see on a search says

eta: there is an email contact on the website (ME education campaign one); maybe someone could reach out?