News from Doctors with ME

Wyva

Wyva

Senior Member (Voting Rights)
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InitialConditions said:
https://doctorswith.me/position-sta...halomyelitis-chronic-fatigue-syndrome-me-cfs/
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Thanks for the link. That position statement on the new NICE guideline looks sensible to me. I hope it's the start of a big publicity campaign among doctors, other health practitioners and clinical commissioning groups who will be deciding what services to provide locally for ME and Long Covid patients, once the new guideline comes out (assuming the new guideline doesn't go back on its key recommendations).
 
Trish said:
Thanks for the link. That position statement on the new NICE guideline looks sensible to me. I hope it's the start of a big publicity campaign among doctors, other health practitioners and clinical commissioning groups who will be deciding what services to provide locally for ME and Long Covid patients, once the new guideline comes out (assuming the new guideline doesn't go back on its key recommendations).
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Yep. The release of the final guideline must be the start of a new campaign for properly funded, safe, adequate, specialist services - not some underfunded network of clinics with no central organisation, aims, or data keeping.
 
Trish said:
Thanks for the link. That position statement on the new NICE guideline looks sensible to me. I hope it's the start of a big publicity campaign among doctors, other health practitioners and clinical commissioning groups who will be deciding what services to provide locally for ME and Long Covid patients, once the new guideline comes out (assuming the new guideline doesn't go back on its key recommendations).
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An unlocked PDF is downloadable from this page (and a copy attached):

https://doctorswith.me/position-sta...halomyelitis-chronic-fatigue-syndrome-me-cfs/

PDF:
https://doctorswith.me/wp-content/uploads/Position-Statement-NICE-2021-guideline-6th-July-2021.pdf
 

Attachments

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Now people can apply to be a member: https://doctorswith.me/home/join-us/

Also, you can now read the code of ethics and conduct and application policy: https://doctorswith.me/the-dwme-code/

"We are thus required to reject applications from individuals who risk breaching these obligations. In particular, we are obligated to exclude individuals or organisations that have prejudicially low standards of scientific process, probity or discipline. We may also require demonstration of significant adoption of requisite standards and/or specific public repudiation of past failings in the field.

These requirements, or others that the Board deem necessary, are determined by the scientifically prejudicial and discriminatory history of this field. High profile and/or insistent examples of contra-scientific behaviour have undermined the field. These include promotion of low standards, misselling of conclusions, interference in careers of scientists who insist upon minimal standards or manipulation of review mechanisms to evade scientific process. This has even included examples of temporary interest in scientific consensus, which is later replaced by highly publicised reversion to very low standards without scientific accountability.

This list of events and their risks of reoccurence is not exhaustive."
 
We may also require demonstration of significant adoption of requisite standards and/or specific public repudiation of past failings in the field.
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Jolly good.

None of this "but I'm so misunderstood" whinging tactic adopted by some as the default strategy when they are called to account. Trying to play the victim when their words have caused no end of suffering to others.

If they now believe something different, then it's time to set the record straight and state that clearly and unambiguously.
 
Job: We are seeking remote volunteer Science Writers who are based anywhere in the world and can synthesise research articles into summaries, by selecting impactful wording and quotes that share the primary take-home points. These headline points must catch the eyes of our time-scarce professional audience, composed of medics, scientists and policy makers.

There are no required hours and commitment level can be determined by the applicant.

Application is by demonstrating ability via a practical exercise. The article must be in formal English.

Applicants must use the share CV facility to upload a trial post that they must write. Any problems submitting your document can be resolved by email after application.The submitted document must apply our existing research summary post format, which was used for a recent Leonard Jason article (link below). That format must be replicated by you to similarly discuss a specific new article in your document (specific article links also shared below).

You may also submit additional summaries of other important / recent research in that same format to support your application. This will also demonstrate additional ability to identify new content opportunities, particularly based on research by DwME figures.

Posts in this specific series of research summaries will not be attributed to the writer. The role will be valid for LinkedIn, CV or other career purposes and we can offer references for work done.

WordPress experience is advantageous, but not required.

Format:
https://doctorswith.me/stigma-and-causal-attribution-new-research/
- Punchy short post title
- Intro paragraphs that deliver meaning and context
- Impactful quote selection 1-3 (length dependent, minimum 1 from actual article, may also include quotes from the authors in other sources about the article)
- Abstract
- Citation construction (Lancet or other scientific formats)
- Identification of all authors who are publicly documented DwME figures e.g. directors, fellows, etc. (names only biographies not necessary)

Apply above format to:
https://www.medrxiv.org/content/10.1101/2021.06.14.21258895v1
Additional citation / quotation can be made from, if you wish:
https://cfsformecfs.org/2021/07/15/me-cfs-research-state-of-the-art-state-of-the-science/amp/

Original Facebook post:

 
Myalgic Encephalomyelitis: “How the Paradigm has Shifted”
We are pleased to announce a brand new webinar series organised by partner organisation Hope 4 ME & Fibro Northern Ireland, in association with many respected organisations including Doctors with M.E., the Workwell Foundation and the London School of Hygiene and Tropical Medicine. Running now until 6th October 2021. Sign up for a weekly programme of education!

Webinar titles:

  • How the Paradigm has Shifted by Professor Brian Hughes
  • M.E. Post-exertional Symptom Exasperation: Activity and rest by Professor Mark VanNess
  • Physiotherapy for M.E. by Dr. Michelle Bull
  • Myalgic Encephalomyelitis –When The Doctor Becomes The Patient by Dr. Nina Muirhead
  • Symptoms and Diagnosis of M.E. in Children by Dr Nigel Speight
  • Adults With Very Severe M.E. by Caroline Kingdon
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https://doctorswith.me/myalgic-encephalomyelitis-how-the-paradigm-has-shifted/
 
Interview with Doctor Nina Muirhead
"Doctor Nina Muirhead is a graduate of Oxford University who works as a Speciality Doctor in Dermatology Surgery, as well as being Chair of the CFS/ME Research Collaborative Medical Education Working Group, a Director of Doctors with M.E., Forward M.E. representative and Expert Witness for the National Institute of Health and Care Excellence (NICE). She is involved in M.E. research and education and has written a free ME/CFS online training module for healthcare professionals. I was interested to interview Doctor Muirhead, as a medical professional and person with M.E., and she very kindly agreed to answer my questions."
https://meandmyisland.co.uk/interview-with-doctor-nina-muirhead/

(transcript and audio)
 
chrisb said:
Any organisation which breaks this news with

“The commercial opportunities and implications are also notable, not least for the pharmaceutical and financial services industries.”

Doctors with M.E.

should be kept at arm's length. IMO
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Sorry, but financial services industries? I'm all for pointing out that money is to be made finding therapeutics (a point not made like this, but in theory), but I cannot understand the reference to financial services.
 
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