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

If emails bounce back, and the forum really wants someone to reach out to Katie, I am only one connection from her on LinkedIn (and am tribally affiliated to public sector transformation leads), so would be happy to send a message if formally requested to do so.
 
I have been in email touch with Katie Johnstone and she has replied. I've told her we're discussing her campaign here, suggested she join us, and put to her some points about working with other ME organisations.
 
JemPD said:
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.
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I agree that this is something that sets ME/CFS patients apart from those with other medica1 conditions. I'm not sure what other physica1 hea1th conditions face this widespread prejudice and the potentia1 for harm, mistreatment or potentia11y permanent worsening of their i11nesses by ignorance of hea1th and care professiona1s.

I do know that the rationa1e for bringing in compu1sory autism training for a11 NHS, socia1 care and care workers was the harm and inappropriate treatments administered to autistic peop1e by hea1th and socia1 care professiona1s that they come into contact with. So there is a precedent here, a1though it's taken decades of campaigning to achieve, a1ong with some undeniab1e cases of resu1tant deaths of autistic individua1s at the hands of medica1 doctors and the statistics showing poor hea1th outcomes/ear1y deaths in this popu1ation.
 
ME/CFS Medical Education Campaign: The NHS must provide mandatory training on ME/CFS – our submission to the APPG

https://mecfs-med-ed.org/2023/05/03...raining-on-me-cfs-our-submission-to-the-appg/

A couple of extracts:

"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either during their time at medical school or after, and as a result patients wait years for diagnosis and receive outdated, inappropriate and harmful treatments.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."

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"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."

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Good point in the article about doctors reacting to hearing about ME. I would bet they're told their medical education is thorough.

I've seen various reactions including skepticism, and outrage when doctors hear there is a very debilitating disease affecting millions, but they've never heard of it.

Both the newly trained, and the very experienced physician have often never heard of ME.
 
Tom Kindlon said:
I thought I would set up a thread for this small group.
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@Tom Kindlon can you give us any information on this? All we know so far is that it's run by @Katie - ME/CFS Med Ed. Perhaps one of you can tell us more about whether it's a group or an individual effort and whether there are links with any existing groups.

I applaud the effort, but I would think it more helpful for there to be one coordinated project for medical education in a country rather than different groups all trying to say possibly different things to each medical school and other clinical education provider. I wouldn't like to see good effort wasted.
 
Trish said:
@Tom Kindlon can you give us any information on this? All we know so far is that it's run by @Katie - ME/CFS Med Ed. Perhaps one of you can tell us more about whether it's a group or an individual effort and whether there are links with any existing groups.

I applaud the effort, but I would think it more helpful for there to be one coordinated project for medical education in a country rather than different groups all trying to say possibly different things to each medical school and other clinical education provider. I wouldn't like to see good effort wasted.
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I don’t know anything more than what is on the website, I’m afraid.
 
Good point @Trish about coordinating medical education about ME.

Very difficult to do though, as the powers that be still don't seem to do it.

For example, the brand new doctor I talked to last summer who had never heard of ME.

I wonder if he'd heard of CFS. If so, I can imagine the eye rolling if I had told him ME is sometimes called CFS.

I don't equate the two names anymore, when I talk about ME to those unfamiliar with this horrible disease, so doctors are puzzled and say they've never heard of ME.

I wonder how medical colleges would approach teaching doctors about a devastating disease that was left out of their curriculum. A disease that upends the lives of millions; a disease for which there is no treatment.

If doctors believe their medical education was thorough in covering many diseases, signs, symptoms, diagnosis treatments etc., my experience is they "shoot the messenger",
when hearing about ME.

It might make a good satirical skit.
Some apologetic, embarrassed medical college honcho trying to impart to angry doctors a seminar on a deliberately overlooked and terrible disease that has ruined millions of lives.

Hhhmmm.....
 
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This video explains how the universities in Northern Ireland will introduce ME education.


Rather than just education for every doctor, I would prefer that a career path for specialist physicians ( post infectious disease?,) is created. We need long-term expertise.

We also need nurses who become specialists so that patients in hospital and in the community receive appropriate care.

To me the quickest way to end stigma is to have dedicated clinicians for ME. It would make the illness respectable!
 
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obeat said:


This video explains how the universities in Northern Ireland will introduce ME education.


Rather than education for every doctor, I would prefer that a career path for specialist physicians ( post infectious disease?,) is created. We need long-term expertise.

We also need nurses who become specialists so that patients in hospital and in the community receive appropriate care.

To me the quickest way to end stigma is to have dedicated clinicians for ME. It would make the illness respectable!
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obeat said:


This video explains how the universities in Northern Ireland will introduce ME education.


Rather than education for every doctor, I would prefer that a career path for specialist physicians ( post infectious disease?,) is created. We need long-term expertise.

We also need nurses who become specialists so that patients in hospital and in the community receive appropriate care.

To me the quickest way to end stigma is to have dedicated clinicians for ME. It would make the illness respectable!
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We are working on that too and have previously awarded bursaries to students from QUB to attend IiME conferences plus currently liaising with Bateman Horne. Surveys from our previous events in QUB would indicate great enthusiasm to learn more about M.E. https://1drv.ms/w/s!AjEToPrFeTbvnkmNROUP_lL6SJJ9
The ultimate aim is of course specialist physicians and nurses but also all healthcare professionals to be at least M.E. aware.
 
@Katie - ME/CFS Med Ed

Thanks for all your work. I'm sorry but my heart sank when I see that you have positioned local ME groups as a first line contact to inform trainee docs. Local groups vary wildly in how informed the members/Chair actually are. It is the case that some local groups are havens of interest in various commercial mind/body 'therapies' such as Gupta, Chrysalis etc.

Many very well informed ME patients despair of their local groups and don't have anything to do with them due to the group members adherence to, again, various commercial mindbody 'therapies (which are scams), and the energy required to influence such local groups. There are numbers of very well informed patients and patient/advocates in some local groups, but it's just pot luck.


For example, the Sussex ME/CFS Society has a dreadful history of collaborating with BPS Psychiatrists (PD White in particular). The Sussex local group was involved in setting up the Sussex 'CFS' Service from 2005 which practiced CBT/GET. Due to the influence of the Sussex ME/Society Chair one Clinical Lead of the Sussex CFS Clinic actually started recommending Lightning Process to ME sufferers!


The Sussex ME/CFS Society Chair is on record publicly smearing/libeling ME sufferers who are informed about ME, the research etc and who don't want BPS services, and the Chair is also on record stating he improved to living a near normal life by doing CBT/GET. See the Reuters link below:


'Online activists are silencing us, scientists say'

'Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life. He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers. They face accusations that they were never ill in the first place; that their condition was misdiagnosed; and that their recovery is therefore fake, he said. As a result, he said, many recovering or recovered CFS/ME patients feel forced to withdraw from the debate.'
https://www.reuters.com/article/us-science-social-media-specialreport-idUSKBN1QU1EI


The Sussex ME/CFS Society, via it's Chair, already has close links with the local Medical School, to the disadvantage of ME sufferers in Sussex (who don't get a say because the Chair controls the Society despite never having been voted for).


Sussex is an extreme example, but please take it on board that local groups Do Not always represent the best interests of ME sufferers (especially severely sick ones) who have the biomedical disease ME.

We *Really* do not want trainee doctors being 'educated' by local groups about all the scam 'cures'/mindbody 'ME cures' etc, or about the most dominant group members' latest dodgy 'treatment' obsession. We do know of group leaders who actively promote that stuff to group members, and group leaders who have had commercial interests in various 'treatments' which they promote to group members..
 
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