News from Doctors with ME

[Andy]

What I would like to see is DwME approaching the British Medical Association, the trade union and professional body for doctors in the UK, to implement this? Policy positions are all well and good but what are they doing, as the "the global professional association for medical practitioners and scientists in the field, bringing together leading experts, regional associations and the quarter of a million healthcare professionals with ME that already existed pre-pandemic. We are a unique authority on myalgic encephalomyelitis and those Long Covid patients acknowledged by NIH, NIAID and BMA narratives who risk progression to this neuroimmune disease. With professional backgrounds developed in hospitals, surgeries, universities, financial services and think-tanks, our range of expertise is both specific and multidisciplinary." to action it themselves, rather than relying on it being incorporated as part of the DHSC effort?

 

[RedFox]

This is good. They seem to have improved the clarity of their writing, and the ideas are spot-on. People with ME demand to be treated according to the standard of care, just like everyone else. And doctor can face legal action if they don't bother to provide that.

 

[Tia]

Yes, this is well written and clear!

 

[Fainbrog]

I didn't read this initially because of their previous tomes were completely undigestible for my ME brain, but having seen posts here suggesting it was more readable than before, I looked and am pleasantly surprised that I managed to get through it without it nearly killing me. That's progress.

 

[bobbler]

Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards

https://doctorswith.me/rights-and-o...vercoming-normalised-disregard-for-standards/

Spot on. You know when someone's 'nailed it', because after you've read it then the whole matter seems like it has always been obvious - do we really not already have this etc (despite I know how hard/much it takes to get it to that stage).

And I think the last para is really well pitched too. I'm certainly convinced of it.

 

[Jonathan Edwards]

What I would like to see is DwME approaching the British Medical Association, the trade union and professional body for doctors in the UK, to implement this?

I agree that DwME should try to influence those that implement policy but the BMA is, as you say, a trade union, and deals with professionals employment issues not patients' interests.

The GMC deals with ethical aspects of doctors behaviour, but in general terms. NICE deals with specific policies but only as recommendations.

The DHSC has clearly abandoned any ethical commitment to safe and effective care.

The only organisations I can think of the normally push forward with policies of this sort are specialty societies and Royal Colleges. British Society for Rheumatology might one day take an interest. Ian Bruce is heading up the government working party. The College of Physicians might help but not if it takes the stance of the immediate past president.

 

[Jonathan Edwards]

There remains a problem, however, that DwME do not seem to have the authoritative expertise that they claim and are not going to influence bodies like BSR or RCP if they show a lack of critical awareness of real clinical problems.

Misdiagnosing ME as anxiety is clearly a problem. Fining parents for poor school attendance for ME similarly.

But the characterisation of weight loss as due to ME/Mast Cell Activation/Dysautonomia is pure speculation and just as bad as 'eating disorder', which of course is just as much a real biomedical category - a brain problem - even if psychologists don't understand that. Inability to eat in ME may be a brain problem too. We just don't know.

The BSR is not going to want to engage with analysis in these terms.

 

[Milo]

But the characterisation of weight loss as due to ME/Mast Cell Activation/Dysautonomia is pure speculation and just as bad as 'eating disorder', which of course is just as much a real biomedical category - a brain problem - even if psychologists don't understand that. Inability to eat in ME may be a brain problem too. We just don't know.

what did I miss?

 

[Andy]

the BMA is, as you say, a trade union, and deals with professionals employment issues not patients' interests

But it could be a useful avenue to follow for DwME given that the members of the BMA will be at a higher risk of contracting Covid multiple times, developing Long Covid and ME/CFS and then running into issues around ability to work. DwME educating the union, who then educate their members, could be a very valuable activity for us the patients.

 

[Shadrach Loom]

There remains a problem, however, that DwME do not seem to have the authoritative expertise that they claim and are not going to influence bodies like BSR or RCP if they show a lack of critical awareness of real clinical problems.

Misdiagnosing ME as anxiety is clearly a problem. Fining parents for poor school attendance for ME similarly.

But the characterisation of weight loss as due to ME/Mast Cell Activation/Dysautonomia is pure speculation and just as bad as 'eating disorder', which of course is just as much a real biomedical category - a brain problem - even if psychologists don't understand that. Inability to eat in ME may be a brain problem too. We just don't know.

The BSR is not going to want to engage with analysis in these terms.

Is there a means for raising those sorts of concerns privately? It feels counterproductive for this otherwise excellent report to be undermined through open debate on, say, Twitter.

 

[Jonathan Edwards]

DwME educating the union, who then educate their members, could be a very valuable activity for us the patients.

I am afraid the BMA is not actually about medical content. It is about jobs and status. I never even joined.

 

[Jonathan Edwards]

Is there a means for raising those sorts of concerns privately?

I have done so and Nina has been very civil, but they don't actually seem to be interested in getting input from people who know the evidence and appreciate the complexity of the clinical context. I don't like to sound griping but PWME need to be aware that the current approach isn't going to be productive and may be the opposite.

 

[Shadrach Loom]

I have done so and Nina has been very civil, but they don't actually seem to be interested in getting input from people who know the evidence and appreciate the complexity of the clinical context. I don't like to sound griping but PWME need to be aware that the current approach isn't going to be productive and may be the opposite.

Massive shame. Scaring senior trust/practice management, with a catalogue of unquantifiable but formidable legal and reputational risks, is strategically brilliant. But from your response, I now worry that anyone with a clinical background, in the crucial meeting where this is tabled, would be able to throw enough shade at the report to discredit it.

 

[Andy]

I am afraid the BMA is not actually about medical content. It is about jobs and status. I never even joined.

Well, that is my point really. If the union could be convinced, if it's not already, that its members suffering from LC and/or ME need supporting in the same way as, presumably, the union stands up for its members who are hit with any other illness that limits the capacity to work, then that change would be a useful one to see.

 

[Trish]

Is it NHS Enland they should be trying to convince? From memory the NHS pages online about ME/CFS are pretty bad, and the NHS E&I response to NICE was dire.

 

[Jonathan Edwards]

Is it NHS Enland they should be trying to convince?

What would they convince them of though?
The call is for adequate diagnosis and management of ME. Nobody will disagree with that. The question is exactly what it insists of and as always in medicine that is a very complicate matter that requires educating professionals. If we had a centralised policy on health care that might lead to some action but the only centralised policy at present is to cut costs everywhere.

 

[Trish]

What would they convince them of though?

To update their online materials and use their education functions to inform doctors about the NICE guidelines and the importance of following them.

 

[livinglighter]

To update their online materials and use their education functions to inform doctors about the NICE guidelines and the importance of following them.

It would be great if DwME could facilitate change within NHS England.

Let me know if I am missing something but isn't POTS a form of dysautonomia which is commonly found among ME/CFS patients?

 

[Jonathan Edwards]

To update their online materials and use their education functions to inform doctors about the NICE guidelines and the importance of following them.

But that isn't exactly what this document is about as I see it.
And as far as I know 'NHS England' just consists of a group of people whose only interest is in what to cut next.

 

[Wonko]

I agree that DwME should try to influence those that implement policy but the BMA is, as you say, a trade union, and deals with professionals employment issues not patients' interests.

The GMC deals with ethical aspects of doctors behaviour, but in general terms. NICE deals with specific policies but only as recommendations.

The DHSC has clearly abandoned any ethical commitment to safe and effective care.

The only organisations I can think of the normally push forward with policies of this sort are specialty societies and Royal Colleges. British Society for Rheumatology might one day take an interest. Ian Bruce is heading up the government working party. The College of Physicians might help but not if it takes the stance of the immediate past president.

Bolding mine

These would be the very same royal colleges that made, so I am told, 2,500 pages of objections to the removal of GET as a 'treatment' for ME/CFS, while the very same people were saying that they didn't use GET anyway?

Somehow, I can't see them being inclined to change, or be helpful, to patients, pwME, in any way.