News from Doctors with ME

What is odd is that the twitter thread indicates an ability to express views in a (reasonably) clear and concise manner. At least we now all know where we stand in his view of the world. Why cannot that style be used more generally in the official documentation?

 

https://twitter.com/user/status/1567163323677802496

 

Does anyone know whether there are funding arrangements in place for DwME? Presumably they started life as a small self funding organisation. This increase in workload suggests that this may now be inadequate. It may even require a remunerated position.

This should certainly enhance the prospects for the business opportunities mentioned in one ill -considered document.

 

Quite a long thread of responses on here:
https://twitter.com/user/status/1566760665594970112


Most of whom are not members of this forum afaik, some long Covid advocates, all agreeing with the fact that the comms are unprofessional and bizarre. I guess it’s not just us.

 

Yes, but would those cover the likely costs, given the likely membership. I think we should know whether there might be any grants made available.

I am sorry if this seems rather archane, but some of us remember what happened with the MEA and Action for ME in the early 2000's. The MEA had a friendly take over, Action for ME seemed to suffer a hostile one.

 

Just to clarify, I fully support the idea of an organisation for medical practitioners who have suffered from ME. Even if general practitioners they will acquire relvant expertise. If they accept into membership others without relevant medical qualification, and fail to make clear whose views are represented, then the organisation has no special standing.

 

I'm also very glad there are organizations for doctors affected by ME. The main problem is that their communications manager has a rather unclear writing style. He uses obscure phrases and it's hard to follow. The good news is that this is easily fixable. Perhaps he can run some of his writing by a colleage, install Grammarly, practice writing in a more direct style, etc. Better writing will make them better advocates. They are on our side and that's what counts.

 

But first, the organization needs to want to fix its problem. At the moment, I see no evidence of acceptance by any of the other Board of Governance members that there is indeed a problem.

 

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

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

 

This is about the best thing I have seen from them so far. Its a fairly reasonable presentation with some reasonable examples and its written well.

Where the entire thing is lacking is in a basic understanding of how a patient can get an appropriate diagnostic and legal representation when it all goes wrong, until you can get to someone who will diagnose you correctly (a 1 in 100 event) you can't expose the other 99 doctors and get legal repercussions. If you put this to the GP Ombudsman they will push it as standard of care, I know I have done it. There is no repercussions for what they are doing and there are so few agreeing with the patients that the model can't work in the organisation as it stands. We need a place to go to send undiagnosed/abused ME patients for proper diagnosis and remedial action to be taken against the doctor(s) who refused them diagnosis and improper care. It needs to be above the existing power structure which at every turn has proved to be completely corrupted by the same BPS nonsense.

So its a proposal I like and understand but its not going to solve the problem, because its not 1 or 2 bad ones its 99 out of 100.

 

A successful legal action against an acute trust or GP which has failed in one of these regards would definitely help, but overall this is a great strategy, clearly pointing out the legal/financial risks of poor practice.

 

One thing Doctors with ME could positively do is diagnose patients and provide themselves as expert witnesses against the DWP and other Doctors for legal challenges for bad diagnoses. That is something as an organisation they are uniquely positioned to provide and might kickstart the legal process of justice.

 

Perhaps more sensible to go after doctors and their professional liability insurers, funded by some US-based win-some-lose-some medical malpractice sharks, rather than pick a fight with the DWP which HMG might have an immediate interest in knobbling.

 

I agree! Well done DwME

I dont imagine it will change much, but its there.