#VerySevereME

[myalgicencephalomyelitiscfstom]

Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time.

from:

[myalgicencephalomyelitiscfstom]

[myalgicencephalomyelitiscfstom]

One month ago to August 8, severe ME day.

I have a Pinterest board with 564 pins on severe ME/CFS here https://www.pinterest.ie/tomkindlon/mecfs-severe-mecfs-mecfs-myalgic-encephalomyelitis/ that could be shared around. It mainly contains images but also links to videos and articles. You don't need to be on Pinterest.

[myalgicencephalomyelitiscfstom]

On #SevereMEday (August 8), I remember my friend Ruth Nolan from Glasnevin in Dublin (Ireland) who has spent around 25 years bedbound with ME since falling ill as a teenager. She had been advised to exercise which appears to have contributed to the severity of her illness.

For a number of years, she worked as a volunteer from her bed with the Irish ME/CFS Association providing valuable work and insight. Unfortunately then in around 2008 she needed dental work done and setbacks from it and follow-up treatment meant her life was reduced to a terrible existence only able for brief conversations with her family. I have only received a few text messages from her since. Her life is really hard.

My thoughts are with her and her family and all those with severe ME and very severe ME and their loved ones today, as well as those who unfortunately passed away due to the illness or complications relating to it.

[myalgicencephalomyelitiscfstom]

From new video:

"Symptoms & management very severe ME/CFS"

Comments from doctors/clinicians/researchers, patients and carers

Discusses various distressing topics

Important info for clinicians & society in general

http://www.dialogues-mecfs.co.uk/films/severeme/

[myalgicencephalomyelitiscfstom]

New 15-minute video on severe ME & very severe ME: "Severe & Very Severe ME / CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"

Includes comments from professionals (incl. Drs Muirhead/Weir/Speight/Shepherd/Nacul & Caroline Kingdon (nurse), patients (incl. Naomi Whittingham, Catherine Hale) & carers (incl. my mum)

Discusses various distressing topics

http://www.dialogues-mecfs.co.uk/films/severeme/

[myalgicencephalomyelitiscfstom]

New 16-minute video: "Hospital Admissions: Issues and alternatives for severely ill ME/CFS patients" https://www.dialogues-mecfs.co.uk/films/severeme/ Features: Drs Speight & Nacul, Naomi Whittingham et al. Gives examples of good and bad practice Discusses distressing topics Contains a lot of practical suggestions

[myalgicencephalomyelitiscfstom]

http://limitedcapability.blogspot.ie/2016/06/my-me-story.html ( Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ) From “My M.E. story” by Catherine Hale