News from Doctors with ME

An image which is taken from the cover of her book.

Here it is again:

https://blog.sepstream.com/is-radiologist-burnout-finally-reaching-a-tipping-point/

 

It's been used on at least five media and other sites.

Here's another: https://www.dailyexcelsior.com/stress-among-doctors/

 

A google picture search gives hundreds of results for this picture. In some cases it is credited to Shutterstock/AshTProductions.

Here is AshTProductions:

https://www.shutterstock.com/de/g/AshTproductions

And if I'm not mistaken, our favorite model:

 

The text has been amended in the last hour or so:

https://twitter.com/user/status/1459599508220919810


https://twitter.com/user/status/1459618974849810437

 

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:

https://www.nice.org.uk/get-involve...by-step-guide-to-registering-as-a-stakeholder

https://www.nice.org.uk/process/pmg...process-and-dealing-with-stakeholder-comments

 

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/

 

https://twitter.com/user/status/1468546561693163526

 

https://twitter.com/user/status/1476326474697560064

 

https://doctorswith.me/nice-gp-upda...uBBhnXfi_TnrqJO4i9FsC8X9ZgOtRAkgf6U0xB6MFV-gU

Isn't this stretching the truth somewhat? ...

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

https://doctorswith.me/myalgic-encephalomyelitis-educational-webinar-series/

 

Facilitators to better ME Care

https://doctorswith.me/facilitators-to-better-me-care/

 

https://twitter.com/user/status/1503839517299589120

 

https://doctorswith.me/me-cfs-what-psychiatrists-need-to-know/

 

This isn't going to persuade a single psychiatrist of anything other than 'Just what we thought, a group of people with MUS and unhelpful beliefs'. To counter the psychiatric story there needs to be a well-argued case and an evidence base. The case exists but it is not made use of.