BMJ Blogs: Ethical Failures in the treatment of CFS

[taniaaust1]

I know our advocacy resources are limited but it often struck me how little seems to be focused on University schools of medicine and related teaching hospitals.

If we ever want to change this situation you'd imagine it has to come from these places.

you probably need people high up though in government supporting this. Without the higher support unless something major happens in our research I dont think our medical schools will start focusing on dr training on our illness unless they have been pushed (its still being left out of many medical textbooks).

 

[taniaaust1]

I totally agree. Many excellent patient advocates have tried, and failed (through no fault of their own), to achieve funding for ME by bringing attention to the illness in political/governmental realms.

This year alone, two physicians (my GP, and one specialist) have apologized to me over the abandonment of ME. They want to help, and are trying to do so within the limitations of the Canadian Medical system, which they acknowledge are significant. I'm sure they are not alone in feeling "hamstrung". Until more physicians demand help for their patients, things are unlikely to improve -- or at least not as quickly as they need to.

Doctors are too busy to be dealing with their patients then to be doing advocacy to governments, though I have found that some do this when they are retiring or semi retired, that's what one of my CFS specialists did. (I also think many do not wish to "rock the boat" one could say before this...supporting CFS patients has been known to destroy some drs carers). We ourselves need to make sure our governments are hearing our personal stories of the issues we are having around this having this illness, the abuse which happens due to the lack of understanding, the failure of medical care etc etc

 

[Keela Too]

@Keith Geraghty Do you know why comments on this article are not being published? I left a comment yesterday morning, and I know of at least one other. I can understand comments being moderated, but surely a delay of over 24 hours is unreasonable? I'm sure others may have left comments also.

(I can't remember what exactly I said now - I guess I should have taken a copy before sending it )

 

[Cinders66]

OI understand the difficult terrain but think we need to make clear that the world is moving On - current day metabolomic research and IOM report etc The BPS model puts too much emphasis on behaviour as modifying factor and by Definition the psychological and social in the title are greater than biological when for many with ME, PS factors are very secondary Or irrelevant. The BPS is applied to ME to keep it in its place, and frame it as a behavioural. Look at the trashy research the BPS lot produce and what they actually think of the illness. If the people at NICE are saying it's a tragedy biomedical research has not been more which is why NGs were on the static list, then journals and medical schools need to think on the role their CFS name and umbrella, BPS CBT model and MUS lumping has contributed to that tragedy. Again, emphasing severity, multi systemic nature, high pain levels and longevity will help to counter the treatable fatigue narratives.

 

[AndyPR]

@Keith Geraghty Do you know why comments on this article are not being published? I left a comment yesterday morning, and I know of at least one other. I can understand comments being moderated, but surely a delay of over 24 hours is unreasonable? I'm sure others may have left comments also.

(I can't remember what exactly I said now - I guess I should have taken a copy before sending it )

Yeah, I left a comment yesterday morning as well.

 

[Barry53]

thank you everyone for your comments and kind words, and also please do challenge us on every paper we write - I learn so much for just being on here and talking with everyone

Wow. Epitomising good science.Thank you.

 

[Old Bones]

Doctors are too busy to be dealing with their patients then to be doing advocacy to governments . . .

Yes, most doctors are too busy to "take to the streets" in demonstration-style advocacy (although several did join #MillionsMissing events in September). But, they are not too busy to ask their governing medical bodies for access to the diagnostic testing their patients require. This act alone would increase awareness, and will become even more crucial when illness subsets are better defined, and customized treatment available -- an optimistic mindset, I realize.

We ourselves need to make sure our governments are hearing our personal stories of the issues we are having around this having this illness, the abuse which happens due to the lack of understanding, the failure of medical care etc etc

Of course we need to keep doing this. But we also need the message to come from as many accurate and credible sources as possible. Besides, whose opinions do we think our governments trust and listen to more -- doctors, or ME patients? We already know the answer, based on the huge impact a handful of psychiatrists has had on policies related to ME worldwide.

 

[Cinders66]

Is the BPS model applied as heavily to any other physical illness? It's mainly a psychiatric model isn't it?

I think given it's twenty year dominance of our field, the question is how much since Wesselys time has CBT model moved the field forward?. And how much is some sort of management stuff Wrapped up as CBT mainly still helping just those young &/or caught early, those who we don't dispute learning to Pace and when able gradual reintroduction of activity, benefits? How much has the over emphasis on PS and CBT/GET Success actually disincentivised looking at the biological- loads I'd say.

The tough thing is the world Is moving away from this framing of CFS but U.K. Establishment is so entrenched in its approach uk journals demand BPS "balanced Praise" as a requirement of getting a mUch needed BPS critique even published :-(.

I also doubt there's many other uncool illnesses which can have left some sufferers Bedridden twenty years since age 14.

I also don't think it's helpful to perpetaute the Gb medical establishments favourite line/excuse of controversial and contested illness. How many IOM reports /IACFSME conferences And prof Komarofs saying that the debate is over do we need before uk stops listening to "la la. La psychobabblers" who don't even need a to try hide bias/ignorance?
Yes there are ME physical illness deniers but just like climate change and skeptics it's not got science behind it. The limits are plain as to see for CBT /GET in CFS no matter if you argue lesser or greater PACE trial stats.

 

[Rrrr]

@Keith Geraghty THANK YOU SO SO SO SO MUCH for this important published work!!!!!!

 

[taniaaust1]

Of course we need to keep doing this. But we also need the message to come from as many accurate and credible sources as possible. Besides, whose opinions do we think our governments trust and listen to more -- doctors, or ME patients? We already know the answer, based on the huge impact a handful of psychiatrists has had on policies related to ME worldwide.

I personally don't think governments do listen much to drs who are treating and helping ME/CFS patients, in fact they in many places are being seen as rogue doctors for their different ideas of things and not supporting the accepted CBT and GET. Look at England, doctors who try to help ME/CFS have been targeted countless times even when doing nothing at all, some have needed to leave the country. Here in Australia too doctors who are supportive of ME/CFS have been targeted and can become at risk of actually loosing their licences.

A couple of the drs who were treating me in the past for ME/CFS are now on the governments radar over here (one of the drs actually told me that they were monitoring her due to her helping ME/CFS people), while another who was treating ME/CFS patients lost his licence.

 

[Jo Best]

Though there is probably a place elsewhere for telling the horror stories of how patients are treated. It would be interesting to collate lots of them, then put them to an audience of medical staff and see how they react.

Trish, this isn't quite the same, but your comment reminded me of this compilation of 'things doctrs say to people with ME' in the article 'It's a Funny Old World' starting on page 56 of the Journal of IiMER Volume 10 Issue 1 June 2016 - http://www.investinme.org/Documents/Journals/Journal of IiME Vol 10 Issue 1.pdf
and

(Perhaps pretending at first that it's about MS or rheumatoid arthritis patients, to hammer the point home).

reminded me of the story in 'Words Matter' by Jørgen Jelstad - https://debortgjemte.com/2013/05/30/scientific-conference-warm-up/

 

[Keela Too]

Dr Charlotte Blease is speaking tonight in Belfast. I am hoping to tweet from the event. @keelatoo