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

[Hutan]

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.

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..

Very well said @Lou B Lou. There's a lot of misinformation about. Even resources that many people would think are useful have problems (for example the StudyPRN course that Nina Muirhead co-authored). The conferences from international organisations such as IACFS/ME; the presentations of the Medical Advisors of national advocacy groups (e.g. Emerge and ANZMES).... It's one of the most difficult problems, that even within the local, national and international groups where people with ME/CFS should have control of the narrative, misinformation prevails.

 

[Lou B Lou]

@Katie - ME/CFS Med Ed

Continuing concerns about advising trainee doctors to contact local ME Groups for education and information about local ME/CFS Services.


In addition, not all patients are assertive, by nature or because they are simply too sick and can't sustain making an argument, even though the patient may be very well informed.


Some patients just don't quite like to criticise their local service, because the therapists were nice to them and appeared to believe the patient (we do know in some/many/most ME/CFS services the 'listening and believing' by the therapists is purely an act, to gain trust and compliance).


Also some patients don't quite like to criticise their local ME/CFS service because they were given a diagnosis by the service after being undiagnosed for years and feel grateful ...... or don't like to criticise the service because patients are totally dependent on letters from their ME/CFS service as evidence for vital benefits (ESA/PIP), for evidence for a care package, in some cases for evidence for suitable housing and for a range of other vital needs. Such letters may not actually reflect the patients actual level of illness, or reflect the patient's actual symptoms and range and levels of disability. But those letters from the ME/CFS clinics are all the patient has in terms of medical evidence. This creates great dependency on the ME/CFS service even when the quality of 'treatments' and the accuracy of the assessment of patients illness/symptoms/disabilities is very poor.


I have similar reservations about turning to local universities' Disability Groups for education for trainee doctors. Any members with ME *may or may not* be informed, may or may not be misinformed.

 

[ahimsa]

Merged thread

The ME/CFS Medical Education Campaign is asking folks to sign an open letter:

https://mecfs-med-ed.org/2023/08/04/please-sign-our-open-letter-to-the-uk-medical-schools/

Shockingly, most doctors receive no training at all on ME/CFS. As a result, many continue to believe (wrongly) that the condition is minor, self-resolving, psychological in nature, or simply made up. Acting on these beliefs, they dismiss their patients’ very real and very serious symptoms; mistakenly assume the symptoms are due to depression, anxiety or stress; fail to provide prompt diagnosis; and give dangerous advice to exercise and ‘push through’ – advice which is likely to provoke repeated bouts of post-exertional malaise, which in turn is associated with a permanent worsening of illness severity.

I’ve written an open letter about this to the chair of the Medical Schools’ Council (MSC), Patrick Maxwell. The MSC represents the UK medical schools. In the letter I demand high quality training on ME/CFS for all current medical students, to enable the next generation of doctors to provide evidence-based medical care to people with ME/CFS. The letter has so far been signed by about 180 people with ME/CFS and their carers, several of whom are doctors or scientists.

 

[Peter T]

The latest article “The British Association of Clinicians in ME/CFS (BACME) doesn't understand post-exertional malaise. - They think it's a type of fatigue.” See
https://mecfs.substack.com/p/the-british-association-of-clinicians
is worth having a look at.

 

[Sean]

BACME, whatever they are, are not our friends. They should be disbanded.

 

[Hutan]

According to their website they are a charity and get money from the National Lottery Community Fund. This doesn’t seem right for an organisation which the patient community views with profound distrust, and which arguably has harmed a lot more people than it has helped. Why should they get funding?

BACME appears to be a 'professional organisation', as in, an organisation set up to support a certain group of people who earn their living in a particular way, like an association of engineers, or occupational therapists. Do professional organisations normally qualify for grants from that NL Community Fund?

It makes me wonder why the main UK ME/CFS charities (e.g. Forward-ME) put up with the ongoing harm caused by BACME. Why is there not ongoing pressure on BACME to improve their materials, which remain unacceptably bad? If there is no response, the charities could contact the NL Community Fund and express concern about the activities of BACME and ask that they not be given funding until their materials are based on evidence and compliant with the NICE Guideline. The charities do have power, particularly if they work together.

That document "An introduction to dysregulation in ME/CFS" would be laughable if it was not still influencing the care of people.
e.g. the conclusion is an approach that sounds like symptom-contingent Graded Activity Therapy to me:

Initially the focus is on consistency and regulating, to support stability before increasing the level of demand. This should be done gradually allowing development of tolerance and adaption prior to any further increases in demand, to enable the body to rebalance.

Therapy programmes should work on different phases of stabilisation and then building tolerance. It is important that any strategies are implemented after a careful assessment of the individual’s condition, and which aspects of dysregulation are most prominent and need to be addressed to support greater stability. Understanding how the body’s physiology can be affected by this illness is an important starting point to any therapy programme.

 

[Lou B Lou]

I did contact @Katie - ME/CFS Med Ed via twitter and after some discussion she did remove the suggestion for trainee Drs to contact their local ME groups for education about ME. I do appreciate ME/CFS Med Ed's work since then.

 

[Trish]

BACME appears to be a 'professional organisation', as in, an organisation set up to support a certain group of people who earn their living in a particular way, like an association of engineers, or occupational therapists. Do professional organisations normally qualify for grants from that NL Community Fund?

I suspect the members of BACME would regard the professional associations for their profession, ie OT's, physios, CBT therapists etc as their professional organisation. BACME seems to be more of a grouping of people across health professions who treat ME, for them to share ideas produce materials and hold meetings. I don't think it would handle things that professional organisations handle like employment issues and registrations.

 

[Trish]

Some posts have been moved to the Forward ME thread.