Calling all Tweeters: Please circulate this message from DwME to enable the success of the Health Minister's ME Initiative

Countrygirl

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Calling all Tweeters:

Many of you will know that the UK health minister, Sajid Javid, when he launched the Rethinking ME booklet in May, held a meeting where he told us that he has a young relative with ME and has witnessed her struggles and the lack of belief of the medical profession. Consequently, he has vowed to rectify the situation. After his speech, he approached Dr William Weir and invited him to join his group of advisors. This seemed very encouraging.

However, as to be expected, there are major hurdles obstructing the Health Minister's plan to encourage biomedical research and foster the medical education of doctors.

A round table was held a couple of weeks ago to which Dr Weir failed to receive his promised invitation. He has written to ask why it failed to transpire but has received no reply.

Meanwhile, one hundred and forty-six patients have sent a letter to Javid requesting that both Dr Weir and Dr Speight, the two most knowledgeable UK doctors, are included in his advisory groups. We hope we will receive a response and that we won't be ignored.

Patients are also frustrated that there seems to be some secrecy cloaking the membership of the working groups. In at least two cases to my knowledge, people who, according to their website, do not support the new NICE guidelines, have been appointed as members of the sub groups.

The Doctors with ME organisation has analysed the situation and warn that Javid's new initiative will fail unless the root problem is tackled.

At this time, there is no system in place that will enforce compliance with the science. The new NICE guidelines are being ignored. by the majority who do not want to review their belief systems and their adherence to the disproven theory that the mind plays some role in the maintenance of the disease. .....or they don't believe it exists at all. This situation urgently needs to be rectified with courage and determination and mandatory powers require implementation to prevent the continuing flagrant disregard of the reality of ME.

Clearly, although mandatory regulations need to be in place, the powerful Royal Colleges are opposed to disseminating up-to-date scientific knowledge about the illness and relentlessly adhere to the old and unscientific dogma. It requires an outside agency to overrule them and ensure there is a legal requirement to adhere to science-based evidence. Without this being mandated, powerful, eminent voices within the Royal Colleges will continue to obstruct progress.

Meanwhile, the BPS adherents who hold eminent positions within the hierarchy are known to have been interfering with the process

DwME has now uploaded a series of slides to Youtube to describe the steps that need to be taken to prevent the failure of Javid's initiative. (see below)

Meanwhile, Dr Hng has tweeted that enforceable mandatory standards are required before any progress can be made. See the tweet below. Please will those of you who tweet re-tweet her message so this new opportunity to promote medical education and support for ME patients does not fail for want of understanding the root cause of the lack of progress to date.

Thank you!



Tweet




Dr Hng + Friends

@DoctorwithME


Are you going to take the opportunity to secure success at scale by mandating enforceable standards,
@sajidjavid
? Education alone will fail if optionality remains. #MECFS #LongCovid #LongCovidKids
@DrEReinhold

@doctorasadkhan

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Doctors with M.E.

@DoctorsWithME
· 13h
Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review A thread https://doctorswith.me/normalised-medical-rule-breaking-and-the-uk-dhsc-me-cfs-review/…
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This is an article about the subject on the DwME website:


https://doctorswith.me/normalised-medical-rule-breaking-and-the-uk-dhsc-me-cfs-review/

Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review

Replacing Working Group Glass Ceilings with Enforceable Minimal Standards

Further to our recent statement regarding major UK announcements, the above presentation provides the solution to concerns about new DHSC ME/CFS Delivery Planning mechanisms and final implementation. Current glass ceilings will limit success of this new process and perpetuate likelihood of future frontline failures. Durable outcomes are needed that can survive current and future processes. Legitimacy and public health outcomes both depend on this durability. Working Groups must be decisively required to take a regulatory compliance approach to resolve these limits.

Merely documenting needs, mandating staff training and hoping for behavioural change will not suffice. Succeeding at scale will require specific and enforceable behavioural change that addresses normalised rule breaking in this field............
This is the link to the Youtube presentation:

Youtube presentation:
 

BrightCandle

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I actually wrote to Sajid saying as much when he first started, that unless he got a handle on the royal collegues that have been openly ignoring the science his initiative will get no where. I argued then as I have done here that these people should not be receiving public funds via the NHS to apply scientifically proven torture to patients instead of the agreed upon science. Nothing short of firing them and all those who support them will solve this issue. It does not surprise me to learn they are trying to exclude Dr Weir and others, they were after all expelled from the NHS some time ago by this same cabal.

This is absolutely something that should be in the health secretaries power to correct, its clearly not something as patients we have any control over. We also likely need mechanisms for reporting NHS staff who refuse to comply with the guidance and there needs to be a process to deal with that and remove them from the organisation, without which the odds ME patients get good care is really low. But at the top level its the health secretaries power to ensure the advisory group is staffed with people who are following the science.
 
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Hip

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Patients are also frustrated that there seems to be some secrecy cloaking the membership of the working groups.
That sounds like bad news. The biopsychosocial psychiatrists may well be secretly trying to influence Sajid Javid, trying to push their erroneous ideas of an "all in the mind" psychological cause of ME/CFS.
 

Countrygirl

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That sounds like bad news. The biopsychosocial psychiatrists may well be secretly trying to influence Sajid Javid, trying to push their erroneous ideas of an "all in the mind" psychological cause of ME/CFS.

I have heard this week that have been ic contact with Sajid Javid with an intention to save their position of power and retain their privileged position
 

Countrygirl

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Richard RamRamyarFavourites ·
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Either the community screams for this, or we will all lose for a generation internationally.
The time for change is now
Or maybe never
The choice is ours
Call for it
Loud and hard


We can mould our future if we choose to

Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review
- Replacing Working Group Glass Ceilings with Enforceable Minimal Standards

Further to our recent statement regarding major UK announcements, the above presentation provides the solution to concerns about new DHSC ME/CFS Delivery Planning mechanisms and final implementation.

Current glass ceilings will limit success of this new process and perpetuate likelihood of future frontline failures. Durable outcomes are needed that can survive current and future processes. Legitimacy and public health outcomes both depend on this durability. Working Groups must be decisively required to take a regulatory compliance approach to resolve these limits.

Merely documenting needs, mandating staff training and hoping for behavioural change will not suffice. Succeeding at scale will require specific and enforceable behavioural change that addresses normalised rule breaking in this field.

We offer a simple 4-Point obligations, rights, risks and liabilities focused approach to achieve this. Ensuring that the Working Groups consider every ME problem and solution in that 4-Point framework will:
empower all ME patients with specific rights that have been made immediately applicable to disease realities, which will particularly benefit severely/very severely affected patients in high pressure situations
empower organisations to use existing management mechanisms to resolve unusually prevalent risks, regulatory failure, regulatory capture and the failure of self regulation in this field

#Doctors #MedTwitter #DwME #MECFS #LongCovid
 

Countrygirl

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Important for patients struggling with content
This link jumps past the background to the solution chapter https://t.co/aw2uCl979f only 2:56 seconds long.
Rest of video outlines rule breaking, glass ceilings in medicine, likelihoods of failure, etc
Video has chapters to navigate + searchable subtitles

NB: pwME can be extremely experienced with highly complex words+concepts, focused on scientific+med vocabulary

Organisational change is delivered via management+regulation. These bring new concepts+phrases from a neglected area of ME change. Without these, change will fail

The full length video is long, covering discussion that would happen in a conversational 'deep dive' meeting

Sadly, content that does not already exist, cannot be summarised. It has to exist first
This long neglected field of ME change must be built upon


YOUTUBE.COM
Normalised Medical Rule Breaking and the Role of Scientific Consensus in ME/CFS Contexts
https://t.co/aw2uCl979f?fbclid=IwAR3Poip8giK7Da8TjjcgHKlPe1w0cweNAQZbMm-R3xdVP6THMcGwedr5Qqw