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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Have set this up in its own thread because although it initially seemed to be on US it is UK based.

About us
The ME/CFS Medical Education Campaign aims to encourage evidence-based medical education on ME/CFS by raising awareness among medical students, medical educators, and institutions.

We’re based in the UK and our main focus is on our particular UK context, but we aim to provide resources that will be useful to clinicians, educators and students overseas as well.

Goals
  • 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.
Free 1-hour CPD course
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https://mecfs-med-ed.org/about-us/
 
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medical education, NHS
The NHS must provide mandatory training on ME/CFS – our submission to the APPG
3rd May 2023 Katie Johnstone
The All-Party Parliamentary Group on Myalgic Encephalomyelitis will be meeting later this month, and we’ve submitted a short statement for their consideration, which is also pasted below.

Please urge the NHS to provide mandatory training on ME/CFS to doctors. Most doctors receive no training on ME/CFS, either during their time at medical school or after, and as a result patients wait years for diagnosis and receive outdated, inappropriate and harmful treatments. The consequences are unnecessary suffering, increased disability, and avoidable deaths.

Hospital doctors have no idea how to deal with patients with severe ME/CFS, and therefore fail to provide the appropriate care. Maeve Boothby-O’Neil died of ME/CFS in 2021 after hospital doctors repeatedly refused to provide enteral feeding, a simple, routine procedure that might have saved her life. More recently the case of Alice Barnett was in the news; Barnett’s family had to fight for her to receive needed medical treatment after hospital doctors refused to provide it, in violation of the NICE guidance.

Children and young people face particularly bad treatment as doctors who don’t understand ME/CFS push them into therapies and rehabilitation programs that are harmful for them, and make them sicker.

The doctors involved are not bad people, they simply don’t know anything about ME/CFS, and they assume (reasonably enough, one would think) that if ME/CFS were really serious, someone would have told them about it. So they fail to understand that the patients they see are in fact severely ill. Ideally when faced with an unfamiliar illness a doctor would take time to read about it (and strictly speaking they are obliged to do so under GMC rules) but in reality they are far too busy.

The 2021 NICE guidelines on ME/CFS have so far been ignored. The NHS has made no attempt to communicate the new clinical standards to doctors. Outdated and harmful medical treatments continue to be the norm. Health Education England, the NHS body responsible for ongoing medical education, provides no training at all on ME/CFS, despite a desperate need for it.

The NHS must urgently provide mandatory training on ME/CFS for doctors. This need not be expensive or time consuming: an excellent, free, one-hour, certified CPD course for doctors already exists, commissioned by the Scottish Parliament in 2021 and recently updated; it can be found here: https://www.studyprn.com/p/chronic-fatigue-syndrome. Requiring doctors to complete this training wouldn’t solve all the problems, but it would be a tremendous step forward, at very little cost.
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A quick glance through the website looks pretty good. Maybe it's a spin off from the parliamentary groups set up by Sajid Javid or from the CMRC or Doctors with ME. At least it doesn't seem to be plagued with the problems of some of the DwME materials.
I think it's excellent that there is a group working on this, and by the look of it, getting a lot of it right. I just hope they have the heft at high level to actually influence medical education, and that should not just be for doctors, but for psychologists, OT's, dieticians, nurses and physios as well.
 
It's not clear whether these two things are related. Is it the Medical Education Campaign, whoever they are, who have made a submission to the APPG that Katie Johnstone, whoever she is, writes about? And does that have anything to do with the parliamentary groups set up by Javid?
It's all very confusing.

Edit: On the sustack articles by Katie Johnstone, she says she has been busy working on the Medical Education Campaign, but doesn't say who with.
https://mecfs.substack.com/p/mecfs-medical-education-campaign
 
Trish said:
It's not clear whether these two things are related. Is it the Medical Education Campaign, whoever they are, who have made a submission to the APPG that Katie Johnstone, whoever she is, writes about? And does that have anything to do with the parliamentary groups set up by Javid?
It's all very confusing.

Edit: On the sustack articles by Katie Johnstone, she says she has been busy working on the Medical Education Campaign, but doesn't say who with.
https://mecfs.substack.com/p/mecfs-medical-education-campaign
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I think Katie is probably running the campaign.
 
Trish said:
If that's so, I wonder whether she has any standing with the NHS or the government and whether she's coordinating with others.
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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.
 
Hutan said:
There are substantial problems with that material, if that is indeed the course being promoted here. I don't support a campaign to get doctors to do that course; is needs considerable work before it is fit for purpose.
UK: ME/CFS CPD module from Study PRN and supporting podcasts
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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.
 
Willow said:
Or when you go to your primary care physician who concludes you are depressed when you are not.
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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.
 
Trish said:
I wonder whether she has any standing with the NHS or the government
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I can't access Linkedin but the brief bit I can see on a search says
Katie Johnstone - Experienced public sector transformation and ...
uk.linkedin.com › katie-johnstone-479aab14
Experience of working as a public sector management consultant and for the NHS on transformational change programmes, redesigning service models and care ...
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eta: there is an email contact on the website (ME education campaign one); maybe someone could reach out?
 
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