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#ChronicFatigueSyndrome

Tom Kindlontomkindlon@disabled.social
2025-10-15

A discussion about friendship and ME

meglobalchronicle.wordpress.co

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

1/

About Friends Gepubliceerd op 3 december 2024 I have been in a mild, moderate, “on a break” and severe relationship with ME for almost 3 decades. As with any relationship, I have seen the darkest and lightest that it has to offer, as well as the side effects. The lightest side effect is definitely friendship with online people who understand this daily struggle. (What a relief to discover that others also have to adjust to sensory overload, managing communication with voice messages, listening to audio books at 80% speed and also not tolerating the smell of cleaning products, perfume or aftershave.) The darkest side effect, even beyond the endless pain and horrible, sometimes terrifying symptoms, has to be the loss of those friends from the days of better health.
Tom Kindlontomkindlon@disabled.social
2025-10-15

Free talks at the IACFS/ME Conference for everyone!
(no ticket/ purchase necessary)

Link: nova.zoom.us/webinar/register/

Copied from a new email from the IACFS/ME

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Free talks at the IACFS/ME Conference for everyone! (no ticket/ purchase necessary) To attend, register once for both Zoom Webinars! Check all your folder as Zoom e-mails do not always land in your primary inbox. Times in Zoom e-mail are not meeting times: attend at times below. October 22, 2025 : 1 - 2 PM Eastern Time (New York City) Mitochondria : Critical for Health and Healing Sundeep Dugar, PhD Blue Oak Nutraceuticals October 23: 3:35 - 4:35 PM Eastern Time (New York City) How to Effectively Handle ME/CFS Disability Insurance Claims Edward Dabdoub Dabdoub Law Firm
Tom Kindlontomkindlon@disabled.social
2025-10-15

(MA, US)
Participants sought for LIFT (Life Improvement Trial) Clinical Trial at Brigham & Women's Hospital (BWH) that is being funded by the Open Medicine Foundation

clinicaltrials.gov/study/NCT06

Screenshot from Massachusetts ME/CFS & FM Association October newsletter

#MEcfs #PwME #CFS @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

LIFT (Life Improvement Trial) Clinical Trial at Brigham and Women's Hospital (BWH) Dr. David Systrom at BWH, with support from the Open Medicine Foundation, is conducting a clinical trial on the effectiveness of low dose naltrexone (LDN) and/or pyridostigmine (Mestinon) for improving the quality of life for people with ME/CFS. You may be eligible to participate if you live within 100 miles of Boston, are between the ages of 18 and 70, had the onset of symptoms before 2023, and have a smartphone. The trial will take about 3 months and involves 3 visits to BWH for testing, 4 virtual visits and using a wearable activity tracking device. Compensation of $300 is available. More details here. Contact jsquires1@bwh.harvard.edu if you are interested in participating.
Tom Kindlontomkindlon@disabled.social
2025-10-14

The Canadian ME/CFS research network, ICanCME, is organizing a free and online conference from Tuesday November 4 to Thursday November 6

Link:
icancme.ca/research/2025-me-co

Screenshot from Massachusetts ME/CFS & FM Association October newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Virtual Conference on ME/CFS: ICanCME2025 November 4 to 6 The Canadian ME/CFS research network, ICanCME, is organizing a free and online conference from Tuesday November 4 to Thursday November 6 from 1:00 to 5:00 PM (ET) each day. Topics include the current state of research, the impact of comorbidities on research, and thinking about research design. The full schedule and a registration link can be found here.
Tom Kindlontomkindlon@disabled.social
2025-10-14

Comparative risk of post-acute sequelae among adults following SARS-CoV-2 or influenza virus infection: A retrospective cohort study among United States adults

journals.plos.org/plosmedicine

Screenshot from the Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

Comparative risk of post-acute sequelae among adults following SARS-CoV-2 or influenza virus infection: A retrospective cohort study among United States adults — Joseph A. Lewnard et al. "Whereas PAS are widely known to occur after COVID-19, our results suggest that the risk of PAS associated with influenza may be under-appreciated and worthy of further study."
Tom Kindlontomkindlon@disabled.social
2025-10-13

3/
"And on the other hand I find it difficult to really show others how little I can do. That’s an unimaginably vulnerable feeling."

#MEcfs #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS
@mecfs

Tom Kindlontomkindlon@disabled.social
2025-10-13

2/

"With other people around, my body generates more adrenaline and I become more lively than I really am. Also because I want a visit to be a nice experience, for the other person. But it invariably results in a crash."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Tom Kindlontomkindlon@disabled.social
2025-10-13

🧵
"How I’m really doing"

meglobalchronicle.wordpress.co

How appearances can be deceiving in terms of what people with ME can do consistently.

"So what people see when I post pictures of an outing are really exceptions based on adrenaline."

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1/

How I’m really doing Gepubliceerd op 8 december 2024 Yesterday, a good friend asked me what I am truly capable of doing. For example, whether I can get dressed and go downstairs every day. Whether I can make tea or coffee for myself. My answer:“No, I cannot get dressed every day. In fact, I haven’t done that in ages. Making tea and coffee isn’t that easy. If I do, it’s at the expense of doing something else. For a while I had a kettle with hot water next to my bed but I spilled too often while pouring and as a result burnt myself. I go downstairs on good days to have my meal lying on the couch. That’s possible for about three to four times a week But today I washed my hair and then I can’t do that. So what people see when I post pictures of an outing are really exceptions based on adrenaline.
Tom Kindlontomkindlon@disabled.social
2025-10-13

Wearable technology in the management of complex chronic illness: preliminary survey results on self-reported outcomes

frontiersin.org/journals/digit

Screenshot from the Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#Spoonies #Spoonie

Wearable technology in the management of complex chronic illness: preliminary survey results on self-reported outcomes — Sawyer et al. "Home-monitoring based mobile applications are feasible and acceptable for a motivated subgroup of people with energy-limiting complex chronic illnesses, and are associated with self-reported benefits in energy management and participation in daily activities."
Tom Kindlontomkindlon@disabled.social
2025-10-13

Relationships between fatigue, cognitive function, and upright activity in a randomized trial of oxaloacetate for myalgic encephalomyelitis/chronic fatigue syndrome

frontiersin.org/journals/neuro

Screenshot from the Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Relationships between fatigue, cognitive function, and upright activity in a randomized trial of oxaloacetate for myalgic encephalomyelitis/chronic fatigue syndrome — Vernon et al. "fatigue was only marginally predictive of UP Time, and no clear interaction by treatment group emerged, indicating that UP Time may be influenced by additional factors such as orthostatic intolerance, post-exertional malaise, or pacing"
Tom Kindlontomkindlon@disabled.social
2025-10-13

UK MEA Governance Review Stage 1 Announcement Autumn 2025

meassociation.org.uk/2025/10/t

Screenshot from the Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

UK MEA Governance Review Stage 1 Announcement Autumn 2025 "In 2025, the board commissioned an independent governance review to understand what is working well, and to identify areas where improvement is needed... " Areas for development include: "Leadership and role clarity: At the time of the review, the organisation operated without a Chief Executive. Trustees were heavily involved in day-to-day operational matters, which blurred the lines between governance and management." The report also highlights the need for better strategic planning, staff training and management, and member engagement.
Tom Kindlontomkindlon@disabled.social
2025-10-12

Upcoming debate (this Wednesday) in the Welsh parliament on ME particularly severe ME and long Covid

record.assembly.wales/Motion/8

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @mecfs @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

NDM8884 - Member Debates Tabled on 24/04/2025 | For debate on 15/10/2025 To propose that the Senedd: 1. Notes that myalgic encephalomyelitis (ME) is a chronic and disabling illness at all levels of severity. 2. Notes that of those suffering from ME, 25 per cent are categorised by NICE as 'severe: mainly bed bound or housebound', and 'very severe: fully bedbound', requiring full-time care and, in the severest cases, palliative care and tube feeding. 3. Regrets that it is often those with the greatest severity levels of ME who are provided with the least amount of appropriate care and treatment. 4. Calls on the Welsh Government to: a) respond to the concerns raised in the Coroner in England’s Prevention of Future Deaths Report, and explain what practical steps they will take to ensure that no patient in Wales will ever be placed in such tragic circumstances as those described in the report; b) ensure that the Adferiad-funded ME services are making provision appropriate to the needs of patients with severe and very severe ME; c) bring together an expert group of health professionals and people with lived experience, at a national level, to develop all-Wales guidance and quality standards on ME, including for the most severely affected; d) make the appointment of an all-Wales specialist consultant for post-infectious chronic conditions - including ME and long COVID - a priority;
Tom Kindlontomkindlon@disabled.social
2025-10-12

"Spend a Week with M.E." 10-minute video

youtube.com/watch?v=2wVcZ7hH9w

From the October 2025 AMMES Newsletter

#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

"Spend a Week with M.E." recorded April 28-May 2, 2025 My name is Evan Erickson, and I was just a thriving college music student a year ago. Now living with severe ME/CFS, I crafted this advocacy video to create a clearer visual identity for this underfunded, under-researched, and complicated disease. Help launch Gifts for M.E., my new charity to provide tools like eye masks and noise-cancelling headphones to isolated ME/CFS patients in need. Gifts for M.E. is fiscally sponsored by MECFS Clinic MN, a 501(c)(c3) volunteer-run nonprofit treating ME/CFS and Long COVID patients at no cost. All donations are tax-deductible to the extent allowed by law. Learn more - https://www.giftsforme.org
Tom Kindlontomkindlon@disabled.social
2025-10-12

2025 IACFS/ME Virtual Research and Clinical Conference

iacfsme.org/2023-conference-ma

Comment: unfortunately this is very, very expensive if you are paying personally

From the October 2025 AMMES Newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

IACFS/ME logo 2025 IACFS/ME Virtual Research and Clinical Conference 2025 IACFS/ME Virtual Research and Clinical Conference will be held October 22 - 25, 2025, from 9 AM - 4 PM Eastern Time. Registration ends October 20, 2025 at 9 AM ET. Read more here>>
Tom Kindlontomkindlon@disabled.social
2025-10-12

Stellate Ganglion Block reduces symptoms of SARS-CoV-2-induced ME/CFS: A prospective cohort pilot study

tandfonline.com/doi/full/10.10

From the October 2025 AMMES Newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

Image of something being injected into the spinal column Stellate Ganglion Block reduces symptoms of SARS-CoV-2-induced ME/CFS: A prospective cohort pilot study DSQ2 measures of PEM, Unrefreshing Sleep, Cognitive Impairment, and OI improved significantly following treatment. SF-36 measures of Vitality, Physical Function, and Social Function improved significantly following treatment. Objective symptoms of POTS associated with infectious onset resolved following treatment. Objective measures of cognitive impairment were reduced following treatment, most notably in the areas of Immediate and Delayed Recognition. Read more here>>
Tom Kindlontomkindlon@disabled.social
2025-10-12

Growing recognition of post-acute infection syndromes. An editorial by Prof Anthony Komaroff

pnas.org/doi/10.1073/pnas.2513

From the October 2025 AMMES Newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

Growing recognition of post-acute infection syndromes Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID affect large numbers of people, and constitute a substantial burden to the U.S. and global economies. The article by Eckey et al., in this issue of PNAS, adds to the growing evidence that the two illnesses have much in common. Moreover, the illnesses may represent just two examples of an even larger, recently recognized class of illness: post-acute infection syndromes (PAIS). Read more here>>
Tom Kindlontomkindlon@disabled.social
2025-10-11

Thanks very much to Joan Crawford (in the UK) for undertaking this challenge in aid of an interesting research treatment trial in Norway that requires further fund-raised money/donations

justgiving.com/crowdfunding/jo

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Photo of Joan on a bike Organised by Joan Crawford Health and medical Story Joan's story In 2004 I was diagnosed with ME. Then, and it remains the case today that there are no NICE approved medical treatments for this profoundly disabling condition. I was fortunate enough to be re-diagnosed with a different condition in 2005, which allowed me access to effective medical treatments. It's been a long slog; however, I am recovered to get back into cycling which I loved before becoming ill. My cycle will raise funds for a Norwegian Daratumumab trial Daratumumab is a medical treatment used in various cancers and auto-immune conditions. In Norway small scale trials has proven remarkably effective in people with ME, compelling enough to warrant larger stage 3 clinical trials, which are now underway in Norway. Around 2/3rds of ME sufferers respond to this treatment giving them a dramatic improvement in the
Tom Kindlontomkindlon@disabled.social
2025-10-11

ME/CFS: Is there a comprehensive explanation for this long-misunderstood illness?

irishtimes.com/health/your-wel

From the October 2025 AMMES Newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

ME/CFS: Is there a comprehensive explanation for this long-misunderstood illness? Wirth and Scheibenbogen’s unifying model hypothesis considers a key role for autoantibodies against blood flow-related cellular receptors in skeletal muscle and the brain. The refinement of Wirth and Scheibenbogen’s unifying model hypothesis has led to a therapeutic concept: a drug called Mitodicure, which is “a novel molecule to treat patients with exertional intolerance and post-exertional malaise (PEM)”. Steps are under way to attract funding for clinical trials. Read more here>>
Tom Kindlontomkindlon@disabled.social
2025-10-11

Please Help David Tuller, Our Champion!

crowdfund.berkeley.edu/project

From the October 2025 AMMES Newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19

Please Help David Tuller, Our Champion! Photo of David Tuller Last spring, David successfully raised money through Crowdrise in order to continue investigating and blogging about the PACE trial. The funds went to the School of Public Health at the University of California, Berkeley, which created a position for David to continue his investigative work. Now the funds have run out, and Tuller has to depend on the generosity of our community to continue his work.
Tom Kindlontomkindlon@disabled.social
2025-10-10

"I still desperately want to live"
A woman who is turning 30 who has spent the last decade living with severe ME reflects on her life

meglobalchronicle.wordpress.co

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs

I still desperately want to live Gepubliceerd op 23 december 2023 One of my favourite films is 13 Going On 30 (honestly, it’s mostly for Mark Ruffalo) and lately I’ve been thinking a lot about Jennifer Garner’s character Jenna chanting “thirty and flirty and thriving” at 13 in her parents basement; then I try to remember all the things I said to myself about what my life might look like at 30 when I was just 13. I wanted to be a forensic psychologist and a vet and a mechanic and a midwife and an ecologist and an infant school teacher and a counsellor and a forensic pathologist (until I realised dead bodies of any species freak me out). I never could decide what I wanted my life to look like when I grew up but I knew I wanted to do so much. I turn 30 next month and I have spent the last decade living with Severe M.E. There have been months of time within that when I would have been classed as having Very Severe M.E and periods of time when I would have been more towards being Moderate-Severe. There have been times when I have felt desolate and times when I have felt so much joy. There has been great loneliness and there has been the love of community. There have been times when I did not know if I’d live to see my 30s and times when I had unbelievable amounts of hope that things would get better. I have survived it all.

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