Countrygirl
Senior Member
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- 5,342
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- UK
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
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/…
Show this thread
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
This is the link to the Youtube presentation:
Youtube presentation:
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
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/…
Show this thread
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
- Post date23 June 2022
- CategoriesIn Compliance, NICE 2021, Policy Positions
Replacing Working Group Glass Ceilings with Enforceable Minimal Standards
This is the link to the Youtube presentation:
Youtube presentation:
