#severeCFS

Tom Kindlon

@tomkindlon.bsky.social

3 weeks ago

STONEBIRD : After much thought, Linda and I have decided not to sell my Carer books anymore. Instead I am making them available as a free download on Stonebird. If you do download the books and they help, please do let us know. Each book took massive time and effort to create, with contributions to two of the books from very ill people around the world. All of them were written with immense care to convey the complexity and skill of being with someone who is extremely, unimaginably ill. The books are : NOTES FOR CARERS : I wanted to make a beautiful, easily accessible, informative guide, it includes contributions from Kara Jane Spencer and Merryn Croft, much loved and much missed. MORE NOTES FOR CARERS : This is our most comprehensive, in-depth guide. CARE FOR ME: This pocketbook guide sets out to gently and tenderly show how you can grow and learn as a carer and look after yourself too. Please see Stonebird for more information. With love and respect to all who struggle to get the right care and understanding. Greg and Linda xxx https://stonebird.co.uk/

Stonebird books on severe ME and caring now available to download for free

Screenshot from Stonebird Facebook page (of Greg & Linda Crowhurst)

stonebird.co.uk

#MyalgicEncephalomyelitis #SevereME #SevereMECFS
#SevereCFS #VerySevereME #PwME

Tom Kindlon

@tomkindlon.bsky.social

4 months ago

ABSTRACT This study addresses the persistent invisibility of people with severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in research by centering their voices and examining how social and institutional forces shape their lives. As a medically contested illness, ME/CFS—especially in its severe form—renders patients both physically incapacitated and socially invisible. Drawing on qualitative content analysis of 342 tweets under the hashtag #severeME, we identify how contested legitimacy, gendered stigma, and systemic marginalization structure the daily realities of 161 individuals with severe ME/CFS or their caregivers. Our findings highlight profound functional debilitation, emotional isolation, and exclusion from care and disability systems. We argue for the urgent need to legitimize contested illnesses, reform models of care, and extend disability protections to restore dignity and support to this neglected population.

2/
Abstract for:
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome

Free fulltext:
www.sciencedirect.com/science/arti...

#SevereMECFS #SevereCFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

AutumnSun9

@autumnsun9.bsky.social

5 months ago

Clearly a theme among other post viral syndrome signs and symptoms. We need to step back and use a wider angle lens.

#longcovid #ME #POTS #SEID #severeCFS

Tom Kindlon

@tomkindlon.bsky.social

5 months ago

4/
"The human body and mind were not designed to be encased in darkness, yet, for so many of us, this is our enforced mode of existence."

#SevereMECFS #SevereCFS #VerySevereME

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

9 months ago

Documentary on life with severe ME/Chronic Fatigue Syndrome on BBC1 YouTube video by Claire Wade

18/

May is #MyalgicEncephalomyelitis (ME) Awareness Month.

You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on a young UK woman with severe ME
www.youtube.com/watch?v=cPH3...

Day 18

#SevereME #SevereCFS #SevereMECFS #MEcfs #PwME

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

10 months ago

Living with Severe ME: Laurel's CFSAC Testimony (2009) YouTube video by Laurel B

8/
May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.

It was made by a woman, Laurel, with severe ME @dreamsatstake.bsky.social Living with Severe ME (5 minutes 13 seconds)
youtu.be/LvweCk44WHs

Day 8

#SevereME #SevereCFS

Sugar Bean

@sugarbean.bsky.social

1 year ago

Me every year

#MECFS #SevereCFS

Tom Kindlon

@tomkindlon.bsky.social

1 year ago

4/

“During the inquest into Maeve's death, the coroner Deborah Archer said it became clear to her that there were no specialist hospital or hospices, beds, wards or other health care provision in England for patients with severe ME”

#SevereME #SevereCFS #SevereMECFS

Tom Kindlon

@tomkindlon.bsky.social

1 year ago

2/

Includes testimony from Helen Donovan, whose son Alem Mathees was instrumental in achieving the court-ordered access to the PACE trial data, leading to its debunking.

#SevereMEcfs #Severecfs

Tom Kindlon

@tomkindlon.bsky.social

1 year ago

3/
The PDF for "Severe ME/CFS and long Covid in secondary care: guide to management during patient hospital stays" is available here:
drive.google.com/file/d/1VUFC...
#MEcfs #CFS #PwME #SevereCFS #LongCovid

Tom Kindlon

@tomkindlon.bsky.social

1 year ago

1.17.2 Recognise that symptoms of severe or very severe ME/CFS may mean that:  people need a low-stimulus environment, for example a dark quiet room with interaction at a level of their choice (this may be little or no social interaction)  are housebound or bedbound and may need support with all activities of daily living, including aids and adaptations to assist mobility and independence in activities of daily living (eg. hoist, electric wheelchair)  need careful physical contact when supported with activities of daily living, taking into account possible sensitivity to touch  cannot communicate without support and may need to choose someone to be their advocate and communicate for them  are unable to eat and digest food easily and may need support with hydration and nutrition  have problems accessing information, for example because of difficulty with screens, sound and light sensitivity, headaches affecting their ability to read, or brain fog affecting their concentration.

4/

Extract from the 2021 NICE guideline [NG206] ME/CFS: diagnosis and management quoted in "Supporting people with ME/CFS in hospital"

meassociation.org.uk/wp-content/u...

#SevereME #SevereMECFS #SevereCFS #VerySevereME

Tom Kindlon

@tomkindlon.bsky.social

1 year ago

Screenshot of abstract and impact statement

New:
The most severely ill patients with ME/CFS in Denmark

Free full text:
www.tandfonline.com/doi/full/10....

Looks like a sympathetic exploration of an important but neglected topic

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#SevereME #SevereMECFS #SevereCFS

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

1 year ago

Documentary on life with severe ME/Chronic Fatigue Syndrome on BBC1 Documentary on life with severe ME/Chronic Fatigue Syndrome on BBC1, featuring Claire Wade who was bed bound for six years.Although the documentary states it...

18/

May is #MyalgicEncephalomyelitis (ME) Awareness Month.

You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on a young UK woman with severe ME
www.youtube.com/watch?v=cPH3...

Day 18

#SevereME #SevereCFS

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

1 year ago

Living with Severe ME: Laurel's CFSAC Testimony (2009) This is a video testimony of my experiences living with severe ME/CFS. It was presented to the CFS Advisory Committee's meeting in Washington D.C. in October...

8/
May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help
by sharing +/or liking this video.

It was made by a woman, Laurel,
with severe ME Living with Severe ME (5 minutes 13 seconds)
youtu.be/LvweCk44WHs

Day #8

#SevereME #SevereCFS

Tom Kindlon

@tomkindlon.bsky.social

1 year ago

Figure 3 Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time. (A) Illustrates the dynamic range of the ME/CFS severity scale based on the disease’s impact on all aspects of the patient’s life, including occupational, educational, social, and personal spheres. (B) Depicts the impact of mild to severe ME/CFS on the patient’s life. Mild: maintained about 80% of pre-ME/CFS functional capacity, as well as full-time employment with limitations due to post-exertional malaise (PEM). Moderate: pre-ME/CFS functional capacity, unable to hold part-time work, with increased limitations in activity, progressing to severe: inability to hold any job, primarily house and bedbound. (C) Shows the patient’s functioning ability significantly degrading from extremely severe A to D, highlighting ME/CFS’s profound impact at this level. Severe nutritional deficiencies led to Gastrostomy tube (G-tube) and Peripher

2/

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

from:
www.frontiersin.org/journals/imm...

#MEcfs #CFS #PwME #SevereME #SevereMECFS #SevereCFS #VerySevereME

Tom Kindlon

@tomkindlon.bsky.social

1 year ago

2/

Millie wrongly got sectioned after being admitted to hospital in order to have a feeding tube fitted. Her mother and primary caregiver has been banned from visiting her and another family member says Millie "has declined massively in hospital"

#PwME #MEcfs #SevereCFS

Tom Kindlon

@tomkindlon.bsky.social

1 year ago

Parents of son with myalgic encephalomyelitis/chronic fatigue syndrome want more research into disease ABC Eyre Peninsula / By Jodie Hamilton Posted 18h ago18 hours ago, updated 7h ago7 hours ago Man lying in bed with mask on, piece of paper on the bedhead, striped blanket, brown headrest Dan Harris has been bed-bound for years.(Supplied: Lynne Harris) Copy linkLink copied Share article It has been four years since 35-year-old former builder Dan Harris has been able to get out of bed. He lies for 24 hours a day in the dark, in silence, wearing an eye mask and earplugs. Any variation to this is a strain on his body, incredibly fatiguing and painful.

From ABC (Australia):

"Parents of son with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome want more research into disease"

www.abc.net.au/news/2024-03...

Also involves EMERGE Australia CEO & medical adviser

#MEcfs #CFS #PwME #SevereME #SevereMECFS #SevereCFS

Tom Kindlon

@tomkindlon.bsky.social

1 year ago

2/
He gives case study information on historic & current patients at risk in NHS hospitals in the UK.

Extracts:
«At the end of my talk one of our best nurses said “So what you are telling us is that everything we have been taught as nurses is wrong for this condition”»

#SevereCFS #CFS #PwME

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

2 years ago

Page 3

6/

3rd item in our postal mail-out to 3215 Irish GPs was "Caring for People with #SevereMECFS" (by Jose G. Montoya, MD; Theresa Dowell, DNP; Amy Mooney, MS OTR/L; Mary Dimmock; Lily Chu, MD, MSHS)

www.omf.ngo/wp-content/u...

(page 3 of 3)
#SevereME #SevereCFS #MEcfs #CFS #PwME #MedEd #MedTwitter

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

2 years ago

Page 2

5/

The 3rd item in our postal mail-out to 3215 Irish GPs was "Caring for People with #SevereMECFS" (by Jose Montoya, MD; Theresa Dowell, DNP; Amy Mooney, MS OTR/L; Mary Dimmock; Lily Chu, MD, MSHS)

www.omf.ngo/wp-content/u...

(page 2 of 3)
#SevereME #SevereCFS #MEcfs #CFS #PwME #MedEd #MedTwitter

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

2 years ago

Page 1

4/

The 3rd item in our postal mail-out to 3215 Irish GPs was "Caring for People with #SevereMECFS" (by
Jose G. Montoya, MD; Theresa Dowell, DNP; Amy Mooney, MS OTR/L; Mary Dimmock; Lily Chu, MD, MSHS)

www.omf.ngo/wp-content/u...

#SevereME #SevereCFS #MEcfs #CFS #PwME #MedEd #MedTwitter