United Kingdom: reMEmber news

[Dx Revision Watch]

Or if you like a nice pipe organ...

 

[Dx Revision Watch]

I used to love this one - we got to elbow each other off the pews...(doing the hauling in of nets actions)...

 

[Andy]

Because of the Covid-19 restrictions this year’s conference will be a Zoom event on Saturday 14th November at 2.30 pm.
Speakers invited, Dr Amolak Bansal, Dr Nina Muirhead, Dr Charles Shepherd, Dr Willy Weir, Dr Paul Worthley.
Tickets for this conference are £5, available online via Eventbrite

http://www.remembercfs.org.uk/saturday-16th-may-awareness-week/

 

[Binkie4]

Have just tried to get a late ticket ( it's 1.50pm ) for above which starts at 2.30, but all tickets are sold out.

If anyone watches, would be glad to hear who speaks and what is said.

 

[It's M.E. Linda]

If anyone watches, would be glad to hear who speaks and what is said.

Excellent speakers. Drs Shepherd, Bansal, Muirhead, Worthley, Weir.
I couldn’t concentrate totally for the full afternoon.

It seemed to be recorded, when I do a thank you email, I will ask whether access will be available to the recording and post here again.

 

[Saz94]

Hiya does anybody know where I can access the recording of this conference??? @It's M.E. Linda ?

 

[It's M.E. Linda]

Hiya does anybody know where I can access the recording of this conference??? @It's M.E. Linda ?

Not been released yet @Sarah94 - just checked again for you. Email from the end of last week said the recording was big and was taking some time to download. It should appear in the News section of the website, when finally completed.

http://www.remembercfs.org.uk/

 

[It's M.E. Linda]

Dr Shepherd’s talk on 14 November 2020

http://www.remembercfs.org.uk/video-annual-conference/

 

[BrightCandle]

Charles Shepards outline, it was recorded so the video's should go up soon.

ReMEmber annual Conference: Saturday 19 November 2022



Handout to accompany presentation by Dr Charles Shepherd on ‘Hot Topics’



1 NICE GUIDELINE ON ME/CFS



Key recommendations:



Suspecting ME/CFS

Referral to specialist service at 3 months

Referral services for children and people with severe ME/CFS

Preparation of care and support plans

Regular reviews



Existing services and website letters



Developing new referral services



APPG meeting in November



MEA summary of recommendations in the NICE guideline:



https://meassociation.org.uk/wp-content/uploads/NICE-Clinical-Guideline-on-MECFS-An-MEA-Summary-December-2021.pdf



Preprint summary of the new guideline (CK, AL, LN and CS):



https://www.preprints.org/manuscript/202211.0016/v1



2 COVID AND FLU VACCINATIONS



Pros



Adverse reactions



Where to go? Boots pharmacies



TWIMC letter re Covid autumn boosters:



https://meassociation.org.uk/product/template-covid-19-vaccine-autumn-boosters-mecfs/



TWIMC letter re Covid and clinical vulnerability:



https://meassociation.org.uk/product/template-letter-covid-19-me-cfs-clinically-vulnerable/



TWIMC letter re flu vaccinations:



https://meassociation.org.uk/product/template-nhs-flu-vaccine-eligibility-me-cfs -



3 LONG COVID



Causative overlaps with ME/CFS - cognitive dysfunction - fatigue -



Treatment overlaps with ME/CFS (>> Dr Weir)

Apheresis, AXA 1125, Co-enzyme Q10, HBOT, IgG, Low dose naltrexone, Probiotics, Vagus nerve stimulation



House of Lords debate on November 17th



BMJ/Evidence Based Nursing blog on Long Covid and ME/CFS:



https://blogs.bmj.com/ebn/2022/11/13/long-covid-what-can-we-learn-about-the-cause-and-management-from-me-cfs/



MEA guide to Long Covid and ME/CFS:



https://meassociation.org.uk/2022/05/new-free-booklet-long-covid-and-me-cfs-are-they-the-same/



4 RESEARCH



DecodeME - research into genetic factors in ME/CFS. Sign up here:



https://www.decodeme.org.uk



ME Biobank



https://cureme.lshtm.ac.uk/the-uk-mecfs-biobank/



5 ME ASSOCIATION



GP mail-out of educational resources to all UK surgeries: EAD, Long Covid, NICE guideline



ME Connect - morning, noon, evening - 7 days a week:



Tel: 0344 576 5326



MEA Facebook:



https://www.facebook.com/meassociation/



Medical Matters is a new addition to the MEA website - where you can search for the answers to frequently asked questions that have appeared in ME Essential magazine over the past five years

https://meassociation.org.uk/medical-matters/



Literature



New 2022 purple book:



https://meassociation.org.uk/2022/05/the-2022-clinical-research-guide-the-purple-book-is-now-available-to-order/



Early and accurate diagnosis:



https://meassociation.org.uk/2022/05/free-booklet-the-importance-of-early-accurate-diagnosis-in-me-cfs/

ENDS

 

[It's M.E. Linda]

Another excellent conference on Sat 19.11.2022

See Dr Muirhead’s reminder of the “GMC Duties of a Good Doctor”

(I took a screenshot, as I thought it could be useful to have!)

https://www.s4me.info/threads/i-emailed-my-doctor-133-times-philosophytube.30456/#post-447690

Edit: correct link