#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]

Video on severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

From: Broken Battery

Very Severe ME/CFS is a debilitating condition causing profound suffering and life-threatening symptoms.

Patients are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to ingest food and need to be tube fed [1].

Most doctors have had no formal training; many think it’s psychological and some don't even believe in the condition. Misdiagnosis and inappropriate management are common. Recently, there have been two high-profile cases of patients being refused support [2] and an inquest into the death of a person due to medical neglect is currently ongoing [3]. The NICE Guideline has more information including special sections relating to Severe and Very Severe ME/CFS [4].

1. https://www.mdpi.com/2227-9032/9/4/459 2. https://archive.li/2023.02.28-221814/https://www.thetimes.co.uk/article/me-patients-risk-dying-of-starvation-under-nhs-care-kkdwjbkl2 3. https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms 4. https://meassociation.org.uk/wp-content/uploads/NICE-Clinical-Guideline-on-MECFS-An-MEA-Summary-December-2021.pdf

It can also be watched here: https://youtu.be/J9fQDXzLTNY

[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

[myalgicencephalomyelitiscfstom]

On August 8, Severe Myalgic Encephalomyelitis Understanding and Remembrance Day, I remember my friend Ruth from Glasnevin in Dublin (Ireland) who has spent over 20 years bedbound.

For the last 7 or so years, things have been particularly tough for her: she is only able for very short conversations with her family and has little mental energy on top of her physical limitations.

[myalgicencephalomyelitiscfstom]

Heartbreaking story on #SevereME and #VerySevereME

http://www.25megroup.org/Campaignging/Severe%20ME%20Day/2016/A%20Day%20for%20Remembrance%20-%20Emily.pdf

Aside: I exchanged long letters with Emily back in 1997 when she wanted to know more about King's College CFS service and Simon Wessely. I didn't recommend either.