UK: ME/CFS CPD module from Study PRN and supporting podcasts

I am afraid I don’t rate this.

What would like to see being emphasised as an expectation of Drs right now with our current state of knowledge and before any money is spent or decisions made about avenues of investigation, is as follows;


I would want a Dr able to make the straight forward assessment that the symptoms of ME, coming as they so often do post infectiously, are in all reasonable likelihood of exactly the mundane biological origin that they appear to be.

Commonly experienced symptoms of infection that last an uncommonly long time. For some reason or other.

I would want this Dr to understand that as reason for the underlying cause of M.E biological processes are perfectly sufficient an explanation.

That there is no need for this dr to imagine up some psychological creations to explain these utterly mundane symptoms. Indeed that there is no reasonable justification for doing so.

Otherwise I would want a Dr who understood that even if some creations of psychology were recommended to them as explanations for their patients ailments by their professional mentors or peers it’s is their own absolute obligation to hold in mind that such projections can be distracting even deadly and that it is their professional and personal duty to remind themselves very regularly that as humans it is easy to become carried away with a belief.

I would want a Dr understand that while they train to read the text and signs and scans and tests, we patients train to read our own bodies and we who are chronically ill train all the more regularly. So while our language may be rudimentary and our priorities statistically out of order, we know and understand enough. We get the basics and we have all been sharing them so we are on average the authority most worth listening to when the subject under discussion is our own bodies.

I would expect this as a minimum standard of good conduct for any Dr with respect for their patients autonomy and concern for their patients welfare.


What I noticed and didn’t appreciate here with this actual document is the angle of approach and along with most of the content.

I don’t think you can cheat this stacked system. A Dr sees their patient having the authority to manage their own bodies, or they don’t.

If there is a temptation to exaggerate the current state of knowledge in favour of your flavour, examine this. If there is a temptation to prop up one’s position on top of the denigration of others (patients with depression or rheumatoid arthritis, pervasive refusal, probably more, I stopped reading) reconsider this.

This no new start. No new paradigm. This is an attempt to turn it around. To point the sharp end of the stick in someone else’s direction. An appeal to authority “It wasn’t me, it was him sir!”
(He doesn’t want to get better!)

What I don’t want from a Dr is speculation presenting itself as something else. Speculate away. Why not? Some of the best ideas come forth out of the confusion. Don’t call it known or settled. But also don’t wriggle and squeeze your way out of a tight spot with noncommittal comments knitting together your supposed knowledge. We all know very well where this leads.


I feel like the author read lots of different resources and mushed them together with heavy emphasis on potential co-morbid conditions that were personally relevant to themselves or perhaps someone else they knew. I really can’t see why they promoted the supposed connections of some and didn’t mention others at all if this was based on a factual analysis.

Also “Chinese women” If this patient was in china then they probably wouldn’t have mentioned her being Chinese. I really hope they meant that she was Chinese first generation to settle wherever this is meant to be. But I am not confident since they elsewhere used the term “Caucasian”.

Edit: I am trying to edit this in my phone and I can see two centimetres of screen at at time so it may be a while.

While we are on the subject document referred to above doesn’t seem to of been put through the necessary rounds of editing to me, I don’t really have to put myself through this but if I were writing an educational manual on a laptop I’d do better.

 

I forgot this one in earlier message. I was really taken a back and had to read the passage twice to make sure I wasn’t mistaken. Seems like
throwing away ground recklessly and completely unnecessarily.

It seems like a move designed to garner approval from some at the expense of others. I think it achieves the latter but I am doubtful that the former will be forthcoming.

The main argument for this educational material is that low quality research has been used as prop for a successful movement to miseducate the medical profession into mistreating millions of patients through psychologising and expecting them to rehabilitate themselves while denying them the medical care that they require.

Can it be strategically viable or morally acceptable to state that this same low quality research is to be trusted so long as the impacts of psychologising are felt by a group of patients that don’t include you?

I don’t think so.

Say we have no use for solidarity with other medically excluded patients, still how can we be so sure that some medics- unconvinced themselves by your educational materials- don’t throw us into the sin bin right along with them?

All of us. Ever since M.E became just slightly less mistreated, than before NICE 2021 and anticipation of this , the program to push patients identical to existing ME patients under newer acronyms instead, in order to mistreat without such constraints has accelerated seeming to swallow up more and more patients. None of us even if already long diagnosed can be assured that we are safely out of reach from the addition of MUSs and FND to our predicament, especially if our condition should deteriorate to the point that we cannot avoid having to push for investigation or intervention of any kind.

 

Agree, LDN has no placebo controlled randomised trials, significant side effects and no real understanding of how it helps ME other than for “pain”. (horrible though this is and not usually given as a first-line treatment). I do not believe it should be recommended without very clear informed consent. (And I do not believe patients are receiving this in NZ but some GP’s seem to be willing to prescribe without specialist review). We have no data on long term side effects, harm or deaths due to opiate receptor antagonism

Have never heard of oxaloacetate as a credible treatment for ME in Ao/NZ. Let alone anywhere else. If you can’t state the level of evidence to your peers in a CPD module for pwME, you are doing pwME a disservice, as well as the profession.

 

I am very much out of the loop, but are there many other resources out in the last year or so by and for medical Drs as educational resources that are supportive of symptom management through biomedical treatment?

I know there is lots on long COVID that includes the group with ME type presentation. But I don’t know yet what I would be comfortable using from this bunch, I am intimidated by the quantity of reading that this would involve.

I know there is the purple book but I haven’t read one in a few years so not sure where that’s at. Charles Shepard tends to be very cautious I think?


Or perhaps is there otherwise a very clear accessible referenced summary information on how the psychologising model has failed to produce any meaningful evidence of its effectiveness in decades…

Exposure of the unacceptably poor research behind a psychosocial explanation.

The lack of justification for making a presumption of psychological cause of any particular illness M.E included.

The problematic practice of demanding absolute proof of an alternative cause as the only possible route to letting go of the conviction of a psychosocial underpinning while also not actually looking for possible alternative causes. In many cases sanctioning those who do look. Acknowledging that with past and current funding levels it’s unlikely that firm biological findings can be confirmed.

But most importantly of all that even if M.E were to turn out to be psychologically mediated illness. All of the treatments for this that health professionals have been taught to use have essentially been proven useless. So HCPs will need to think again and listen to patient feedback to judge the helpfulness or otherwise, of their attitudes towards patient presentation and any interventions offered or denied.

I would like a really good review of the medical treatments touted or commonly used and the relative effectiveness if any evidence is available.

But I think it’s important to start from a solid position on how the status quo approach ineffective and wasteful of time, resources for HCPs and the lives of their patients.

That there was never any justification for pursuing a BPS model given the clear evidence history of discriminatory ideas and practices behind its inception.

The on going conflicts of financial interests behind BPS implementation.

The wealth of evidence of failure of what we have now.
Actually worse than nothing of doing nothing of it.

We have a wealth of evidence here because BPS has been so well funded to study itself.

So I don’t think we have any need to overstate certainty in other areas in order to make a case for treatment. Not doing this is leaving us to get sicker and sicker. There is huge suffering. There is more than enough early death. Misattribution of symptoms, misdiagnosis, missed diagnosis, medical neglect and withdrawal of care, social supports, the spread of disbelief leading to banishment from society either physically or psychologically because no one trusts such a patients own account of their body and existence.

We all want better symptom management which will probably require pharmacological treatments and other interventions targeting biological factors. But we have been obstructed when it comes to fully testing such approaches. So of course there is less certainty here. I am not at all opposed to opening up access to experimental treatments. It’s the only way most us long sick will get the chance to improve. But I am extremely alarmed by these unknowns being claimed as known in as much as to include them in a medical education document with no clear distinction between the established and the speculative. As @hibiscuswahine mentioned this could amount to a lack of informed consent for the patient, something we have been fighting very hard against in the context of harms from GET and CBT. It seems unethical to educate doctors I this way, either they don’t believe you and are more likely dismiss the arguments for biomedical care by association or they do believe you and prescribe something maybe specifically because they have been misled.

 

@dave30th as a fellow of DWME can you raise this point with them as well as the fact that Jonathan Edwards testimony is universal, not just appropriate for ME research.

 

I haven’t done the module but have read through the case definitions by Trish.

I choose to follow the clinical practice guidelines we have in NZ (and note we lack CPET availability here - it is not publicly funded, to my knowledge, and I have anecdotal reports of pwME getting considerable worse after CPET’s (done by exercise physiologists in private sector as part of sports medicine and have no knowledge of PEM and risks). Caveat: I am retired from clinical medicine but this would be my recommendation and how I manage my ME.

The guidance for NZ doctors (and other health professionals eg. physiotherapists) is via Dr Lynette Hodges (PhD, MSc) Senior Lecturer in Sport and Exercise at Massey University’s College of Health, who is our leading researcher on the use of CPET’s in ME/CFS for the last 6 years.

Her recommendation using the best evidence from comprehensive knowledge of the literature, and including her team’s active research outputs, in Sept 2021.

“while some mildly affected individual’s may be able to complete exercise, they should avoid triggering PEM.

CPET can differentiate the people that may be able to exercise, compared to those that perhaps cannot exercise due to cardiovascular impairment.

However for ME/CFS, it is important to note that CPET in routine clinical practice is not recommended, due to the risk of elevated ME/CFS symptoms.

CPET is especially unsuitable for more severe patients”

People can read the whole document here where she gives comprehensive advice on managing a pwME (including advice for the patient to monitor BP and HR doing simple tasks and keeping records for PEM and understanding own physical limits in simple and everyday activities of daily living before even considering exercise). I presume this is in line with the ME Association advice in the UK.

https://static1.squarespace.com/sta...36/Hodges+Statement+on+MECFS+and+Exercise.pdf

Editing: typos

 

Merged thread

MEA article about the updated version

https://meassociation.org.uk/2023/0...hcare-professionals-on-me-cfs-and-long-covid/

 

ME Association
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Learna StudyPRN Continuing Professional Development (CPD) for #HealthcareProfessionals

The CPD accredited module on #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome, originally developed by Dr Nina Muirhead with the UK ME Research Collaborative, has been updated (Jan 23) following feedback, and informed by the latest practice experience from medics leading development of expertise internationally.

The CPD module is free, available anytime online and offers 1 CPD point.
It takes less than an hour to complete.

The module includes:
- Increased understanding of M.E. and key features and symptoms
- Increased confidence in diagnosis
- Increased confidence in managing symptoms
- Knowledge of the current evolving international narrative on ME/CFS
- Knowledge of the latest guidance on ME/CFS from the UK’s National Institute for Health and Care Excellence (NICE)

https://www.studyprn.com/p/chronic-fatigue-syndrome
Study PRN has provided an outcome report regarding a recent survey taken by healthcare professionals who have completed the module:

https://www.flipsnack.com/russellfl...essment-survey-outcomes-report/full-view.html

The ME Association also has an information poster that is available for download here: https://meassociation.org.uk/sprn
#pwME #MECFS #MyalgicE #CPD #MedicalEducation #MedFacebook