News from Doctors with ME

Dx Revision Watch said:
Am I right in thinking DwME were not registered stakeholders for the NICE Guideline but added their name to a letter or statement signed by other stakeholders?
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DwME did make a position statement 'on behalf of' eight stakeholder organisations, 'Dr HNG Group Submission, with and on behalf of Doctors with M.E.' being the ninth entry on the list of organisations provided in the statement.

https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-38#post-356659

I don't think DwME was a registered stakeholder, but a group submission on the draft guideline was apparently made by Dr Hng and others. On the NICE comments submission form, if those submitting are not a stakeholder, the organisation name should be left blank, but it was completed with the names of those the joint submission was made by:

https://www.s4me.info/threads/nice-...consultation-december-2020.18352/#post-318561

It seems unclear whether the submission would have been considered by NICE:
How can individuals get involved?

We accept comments from individuals who do not represent a registered stakeholder organisation. These will be considered, but will not receive a formal response. Therefore, we would encourage you to submit your comments through a registered stakeholder organisation.
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https://www.nice.org.uk/get-involve...by-step-guide-to-registering-as-a-stakeholder

NICE guidelines manual said:
11.1.1 Responding to comments

Most comments will be received from registered stakeholders. These comments, and the responses to them, are sent to stakeholders with the advance copy of the full guideline, and are posted on the NICE website when the guideline is published (see section 12.2). Comments received from non-registered stakeholders, and comments received after the deadline for submission, are not considered and are not responded to; such comments will be returned to the sender.
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https://www.nice.org.uk/process/pmg...process-and-dealing-with-stakeholder-comments
 
Dx Revision Watch said:
"...and its success securing annual influenza vaccinations for half a million ME/CFS patients in the UK are some examples."
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Quite apart from the dubious nature of the factual background, how do we know this is a success?

I am not aware of any evidence to support giving flu vaccines to PWME rather than anyone else. If anything there is a worry that PWME may react to vaccines more than others, not so much in terms of serious sequelae but at least in terms of feeling awful without that much benefit If PWME are relatively isolated then their need for flu vaccine may be less.

I find this pretty irritating.
 
Health Education England removes Long Covid video after scientific evidence supports complaints

"Professor Trudie Chalder of King’s College London, co-author of widely debunked PACE trial and Director of the Persistent Physical Symptom Service at South London and Maudsley NHS Trust, gives dangerous advice, ignorant of pertinent clinical knowledge, and presents trial findings in a misleading manner in a webinar on Long Covid that is now removed from medical education websites

Doctors with M.E. support Health Education England’s intervention and scientific rigour to protect Long Covid patients by removing a medical education video promoting biased and outdated psychological theories. We also recognise the British Thoracic Society’s foresight in removing the link to this erroneous material."

https://doctorswith.me/health-educa...fter-scientific-evidence-supports-complaints/
 
ME/CFS: The urgent need for improved generalist medical education

ME/CFS is associated with verifiable pathology including autonomic dysfunction, reduced cerebral blood flow, increased immune system activation, and disordered hypothalamic-pituitary-adrenal function.(4) Current streams of biomedical ME/CFS research include investigating genetic predisposition(6) and mitochondrial dysfunction.(7) Despite this, many doctors mistakenly believe ME/CFS to be a psychological disorder or that there is no objective evidence of physical pathology.(8)​

Full article: https://doctorswith.me/me-cfs-the-urgent-need-for-improved-generalist-medical-education/
 
Wyva said:
ME/CFS is associated with verifiable pathology including .... disordered hypothalamic-pituitary-adrenal function
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This is the reference given for that:
4. Carruthers BM, van de Sande MI, De Meirleir KL, et al. 2012. Myalgic encephalomyelitis – adult & paediatric: International
consensus primer for medical practitioners. Available at: https://www.me-
international.org/uploads/1/2/7/6/127602984/me_icprimer_2012.pdf [accessed 4th December 2021]

Does anyone know of any good evidence for 'disordered hypothalamic-pituitary-adrenal function', even now 9 years or so after the Carruthers et al paper was published?
 
https://doctorswith.me/nice-gp-upda...uBBhnXfi_TnrqJO4i9FsC8X9ZgOtRAkgf6U0xB6MFV-gU
Putting it into Practice: What NICE ME/CFS means for GPs
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Isn't this stretching the truth somewhat? ...
ME/CFS is a positive diagnosis based on its clinical features. While it is important to rule out other potential causes for symptoms and to look for comorbidities, it is not a diagnosis of exclusion. NICE states that the four main symptoms of ME/CFS are:

  • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
  • Post Exertional Malaise.
  • Unrefreshing sleep or sleep disturbance.
  • Cognitive difficulties or ‘brain fog’.
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No matter what we might think, from a clinical perspective surely it is still a diagnosis of exclusion? Until we have a positive biomarker, then it cannot be a positive diagnosis?

If I'm right about the above, then doesn't this advisory from DwME discredit their competence, and the validity of their message? Just reinforcing the notion of it being opinion based, without real scientific underpinning?

More harm than good?
 
Myalgic Encephalomyelitis: Educational Webinar Series

We are pleased to announce that the M.E. (Myalgic Encephalomyelitis) Educational Webinar Series organised by partner organisation Hope 4 ME & Fibro Northern Ireland and hosted by the Health and Social Care Clinical Education Centre of Northern Ireland is now available for public viewing. Featuring experts and speakers from Hope 4 ME & Fibro N.I., Doctors with M.E., the Workwell Foundation., Physios for M.E., Northern Health Trust N.I., The Royal College of Occupational Therapists N.I. and Long Covid Foundation.
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The webinar explores the radical changes that have taken place within the new NICE Guideline on ME/CFS, shares knowledge and experience, and contemplates implications for the developing Long Covid crisis.
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https://doctorswith.me/myalgic-encephalomyelitis-educational-webinar-series/
 
Facilitators to better ME Care
It is widely acknowledged that barriers to good care for ME/CFS patients exist due to the lack of biomarker, disease specific treatments and poor medical education about this disease. There is also inherent cultural bias against invisible illness and illnesses affecting predominantly women.

We sought the opinions of 656 volunteers who took the time and effort to engage with online learning about ME/CFS and gathered data from over 156 doctors, 103 Physiotherapists, 96 Nurses, 61 OTs, Medical Students, Osteopaths, Pharmacists, Dieticians, patients, relatives and caregivers. Between 618 and 647 responses were gathered for each question, the results are fascinating.
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https://doctorswith.me/facilitators-to-better-me-care/
 
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