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?
 
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:


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.
 
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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.
 
Reading through this latest discussion I feel saddened that there seems to be a rift being created between DwME and some other ME advocates as a result of problems with their communications style which have not been addressed effectively. There does not appear to be in the leadership of DwME any interest in listening to those of us commenting from outside the organisation, so all I can hope is that members of DwME are working together within the organisation to improve the situation.

I think we need to be careful to focus our comments on constructive criticism of the actions and writings of DwME and their representatives, and praise where it's due, and avoid alienating them further by questioning their intentions or motivation. I feel confident that their intentions are good, and hope they can become a force for good - in medical education particularly.

As someone helping to run this forum I do understand how hard it can be to hear criticism of one's dedicated voluntary work on behalf of people with ME/CFS. We get some very unpleasant criticism sometimes, usually within the private spaces of communication between members and moderators, but sometimes spilling over onto Twitter and other social media. It can be hard to take, especially when it comes from other ME advocates, so in that sense I have some fellow feeling with those working very hard for DwME and facing criticism.

If anyone from DwME is reading this, perhaps it would be worth your while talking to AfME and the MEA leaders about how they handle criticism of their work from other pwME. I think you will find that they would not support representatives of one organisation posting on Twitter on behalf of that organisation sweeping generalisations and innuendo about members of other organisations.

This should not be a 'them and us' situation. Ideally the roles of DwME and S4ME would dovetail beautifully, with S4ME providing a moderated space for all pwME to communicate effectively with each other. If all the members of DwME were to join S4ME too and discuss their work here, and join in the discussions of research and the mutual support, that would enrich both organisations.
 
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.
 
RedFox said:
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...
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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
Doctors with M.E. proposes a simple solution to ensure success of the UK’s ME/CFS Delivery Plan.
Following the then Secretary of State for Health and Social Care Sajid Javid’s announcement of a cross-nation delivery plan for ME/CFS, work has been underway at the Department of Health and Social Care to identify issues and find solutions. Doctors with M.E. fully supports and is contributing to this work looking at attitudes, medical education and service areas (including health, welfare, social care and education) in ME/CFS.

Alongside this work, we highlight an important consideration which does not yet have sufficient prominence in ME/CFS advocacy and policy-making. This is the fact that ordinary standards which are routinely disregarded when it comes to ME/CFS are not in fact optional.

Discriminatory practice and standards in research, clinical knowledge and safety which would not be tolerated in any other disease areas have become normalised in the field of ME/CFS. However such practice is unlawful, harms patients, and generates risk. Bringing this fact into the conscious awareness of providers, practitioners, frontline managers, organisational governance, insurers, educators, funders and all concerned will incentivise and speed up the adoption of change.

Change will not come quickly just because we teach. There is still resistance and influential people who undermine progress. Proactive action is needed to encourage and enable change. We propose a simple solution which explicitly removes the perception of optionality in meeting basic standards in the care and service of ME/CFS patients. It takes the form of official guidance called “Rights and Obligations in ME/CFS”
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https://doctorswith.me/rights-and-o...vercoming-normalised-disregard-for-standards/
 
Sly Saint said:
Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards

https://doctorswith.me/rights-and-o...vercoming-normalised-disregard-for-standards/
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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.
 
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BrightCandle said:
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.
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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.
 
Shadrach Loom said:
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.
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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.
 
BrightCandle said:
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.
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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.
 
Good piece from DwME. Thanks. :thumbup:

Shadrach Loom said:
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.
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DoctorswithME
Discriminatory practice and standards in research, clinical knowledge and safety which would not be tolerated in any other disease areas have become normalised in the field of ME/CFS. However such practice is unlawful, harms patients, and generates risk.
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It will take lawsuits, or at least serious threats thereof.
 
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