With ME/CFS 34 years, housebound 29 years.
Health has deteriorated post Covid (March 2022).
Irish ME/CFS Association* trustee 26 years.
26 publications in peer-reviewed journals.
MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon
This profile is from a federated server and may be incomplete. Browse more on the original instance.
Solve M.E. Patient and Caregiver Resource Guide: Post Exertional Malaise (PEM) and Rest
A shorter version of this was in their latest e-newsletter
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
I signed saying: The 2019 review is fatally flawed. See “Problems with the amended version" by Michiel Tack https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/detailed-comment/en?messageId=266353165# for a carefully argued, well-referenced critique which built on earlier critiques by Robert “Bob” Courtney and myself.
"I know of at least two #MECFS studies that failed to get completed because they failed to find enough participants. That’s a horrible thing to have happen in a field that needs every research dollar it can get its hands on."
Sharing with permission, a message by Dr. Hwang (via @dakota_150 )
Dr Hwang was lead author of WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome
Long-term health outcomes of Q-fever fatigue syndrome patients
"many experienced post-exertional malaise complaints (98.9%)...This is line with...other patient populations that experience long-term sequelae of infectious diseases"
Registration is open for the upcoming NIH Symposium For Promoting The Advancement Of Research Knowledge In ME/CFS (SPARK ME) on December 11, 2023
Go to: https://event.roseliassociates.com/me-cfs-symposium/for more info
David Tuller: With so many #longCovid patients being diagnosed with ME or ME/CFS, it’s essential physiotherapists (or physical therapists in US) - grasp the essentials of the disease, & in particular the existence of post-exertional malaise". "I recently spoke with 2 of the authors of A Physiotherapist's Guide to Understanding & Managing ME/CFS about why they wrote the book, how they formed Physios for ME, etc.”
From September 1st 2023 - Deadline: December 11th 2023
2-minute segment on (US) WFRV Green Bay TV
Tries to be sympathetic but somewhat flawed e.g. says fatigue rather than PEM is cardinal symptom of CFS & says "important to stay active" with video of person doing weights 🤦♂️
Full text not free:
"Chronic fatigue syndromes: real illnesses that people can recover from"
Some wishful thinking from the biopsychosocial school
What was supposed to be the definitive trial, the £5M #PACEtrial, found no increased recovery rates with CBT or GET using the protocol recovery criteria:
"A history of CFS/ME was independently associated with CVD [Cardiovascular Disease] after adjusting for traditional CVD risk factors"
"Energy-Saving Self Care Cards" from Ricky Buchanan
The cards are not free but she does post some examples on the associated social media pages
"Major study hopes to tackle ME stigma: DecodeME is hoping to test 20,000 DNA samples from people living with the condition"
This extract briefly explains the importance of the study & highlights how more samples are still needed. Please try to use reach all your contacts in whatever way possible to encourage them to sign up
Healthcare system barriers impacting the care of Canadians with #MyalgicEncephalomyelitis: a scoping review
"Healthcare system barriers arose from an underlying lack of consensus & research on ME & ME care; the impact of long-standing stigma, disbelief, & sexism; inadequate or inconsistent healthcare provider education & training on ME; & the heterogeneity of care coordinated by family physicians."
Some travel tips for people with ME/CFS
TABLE 2. Strategies to provide ME/CFS patients for testing.
Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Disability At Home:
"This website documents the ingenuity and creativity that caregivers and disabled people, including those with chronic illnesses, use every day to make home accessible..."
"To Anyone Afraid to Get a Disabled Placard Because You're Worried About Judgment"
Good news from Norway:
"Forskningsrådet (The Research Council) has awarded the team at Haukeland 11 million NOK to their research on ME/CFS and energy metabolism"
This is equivalent to €957,902/US$1,024,396/ST£827,980
Recovery Position Statement
This 2-page document seems to me to be a fair overview of the topic, though will likely be disappointing for people unaware of some of the research.
It shows they have less than 16,000 DNA samples (they have funding for 25,000). Hopefully the ME community will make a big effort to reach more people in next 8 weeks.
From: DecodeME the ME/CFS Study @DecodeMEstudy
DecodeME Recruitment is closing on November 15 at 5pm. Sign up and complete the questionnaire by this date to be a participant.
There will be time after this to provide your saliva sample
Sign up: https://shorturl.at/dklxS
L”Association Française du Syndrome de Fatigue Chronique (ASFC) a édité un petit guide du pacing, conçu pour les malades
"Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID"
by Prof Brian Hughes ( @b_m_hughes ), Prof Steven Lubet & David Tuller DrPH
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT
"17 Things I Don’t Admit on Bad Days With Chronic Fatigue*"
*Note that she clarifies "people with many illnesses experience chronic fatigue, but it should not be confused with #chronicfatiguesyndrome / #myalgicencephalomyelitis, a distinct diagnosis that also includes #chronicfatigue as a symptom."