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Tom Kindlontomkindlon@disabled.social
2025-06-19

Poor results from this ME/CFS +/or Fibromyalgia service in Canada

"Health outcomes of patients in the Complex Chronic Diseases Program"

bcmj.org/articles/health-outco

"New approaches & research are urgently needed to improve therapeutic interventions for patients with complex chronic diseases"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

ABSTRACT Background: Complex chronic diseases affect almost 3% of Canadians and lead to persistent, debilitating symptoms. The BC Ministry of Health funded the Complex Chronic Diseases Program to address service gaps for affected individuals. We evaluated health outcomes of the program’s patients. Methods: Analysis of data from the Complex Chronic Diseases Program Data Registry (June 2017–September 2022) focused on patient-reported outcomes and clinical measures at baseline, 6-month follow-up, and discharge, and on changes in symptoms across these time points. Results: Among the 668 participants included in the study, slight improvements in overall physical and mental health were observed between baseline and discharge. However, symptoms such as sleep dysfunction, fatigue, and pain showed no significant changes. Conclusions: While participation in the Complex Chronic Diseases Program yielded some health benefits, further research and interventions are required to address symptoms and optimize patient outcomes. The further development and use of objective outcome markers are needed for improved program evaluation. New approaches and research are urgently needed to improve therapeutic interventions for patients with complex chronic diseases.
Tom Kindlontomkindlon@disabled.social
2025-06-14

Some low-energy products for washing one's hair

From: May 2025 Caregiver Call Summary

Links:
walgreens.com/store/c/walgreen

medline.com/product/ReadyBath-

walgreens.com/store/c/cleanis-

cvs.com/shop/cvs-health-pre-mo

Hashtags:
@chronicillness
@spoonies
@mecfs
#ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #POTS @pots @fibromyalgia
#Fibromyalgia #Fibro #FMS
#chronicillness
#chroniclife
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Washing one’s hair if one has energy and arm limitations can be very difficult. A call participant mentioned Shampoo Caps that one places over the hair, rubs in, removes the cap and hair is cleaned – no rinsing needed. Some of these are available with fragrance free shampoo (They said they tried both of these. The Medline was what the hospital provided for their partner.) https://www.walgreens.com/store/c/walgreens-rinse-free-shampoo-cap/ID=prod6293401-product https://www.medline.com/product/ReadyBath-RinseFree-Shampoo-and-Conditioning-Caps/Z05-PF66410?question=Shampoo%20cap& They also told us there are wash gloves with similar shampoo – though they haven't tried this. https://www.walgreens.com/store/c/cleanis-aqua-pre-moistened-wash-glove,-shampoo/ID=prod6187681-product https://www.cvs.com/shop/cvs-health-pre-moistened-no-rinse-shampoo-glove-prodid-920210?skuId=920210&cgaa=QWxsb3dHb29nbGVUb0FjY2Vzc0NWU1BhZ2Vz&gStoreCode=R10694&gQT=1
Tom Kindlontomkindlon@disabled.social
2025-06-08

🧵
Medscape (widely read by health professionals):

‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms

medscape.com/viewarticle/sympt
(may require free registration)

Thought this was good & interesting.

@chronicillness
@spoonies
#lupus @lupus #neisvoid
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses
#Spoonies #ChronicallyIll
#POTS @pots #IBS @ibs fibromyalgia@a.gup.pe
#Fibromyalgia #Fibro #FMS @longcovid #LongCovid @mecfs #MEcfs
1/

Medscape Medical News > Features ‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms Tara Haelle June 03, 2025
Tom Kindlontomkindlon@disabled.social
2025-06-08

2/
"University makes 'ground-breaking' discovery offering hope for chronic pain sufferers"

news.stv.tv/north/aberdeen-uni

2-minute video clip plus article from Scottish TV news features woman with #CFS & #fibromyalgia

#chronicpain #rheumatoidarthritis @chronicpain @chronicillness @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

News / North East & Tayside University makes 'ground-breaking' discovery offering hope for chronic pain sufferers Researchers hope the breakthrough will lead to new treatments for conditions such as fibromyalgia and rheumatoid arthritis. Play VideoAdobe Stock Research: University makes 'ground-breaking discovery' for chronic pain treatment.
Tom Kindlontomkindlon@disabled.social
2025-06-04

Going to the Doctor When You Have a Chronic Illness

Hashtags:
@longcovid
#LongCovid
#chronicillness #ChronicallyIll #hiddenillness
#invisibleillness @chronicillness
@spoonies
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #IBS @ibs #PosturalOrthostaticTachycardiaSyndrome #POTS @pots @mecfs
#MEcfs

GOING TO THE DOCTOR WHEN YOU HAVE A CHRONIC ILLNESS What people think it's like ---------- pie chart showing: Go to appointment Get diagnosed Receive treatment and support Heal your body and get better What it's actually like --------- pie chart showing: Waiting months for an appointment Multiple/ongoing appointments Being left untreated Treatments being ineffective and/or dealing with side effects Worsening and/or new symptoms Dealing with Medical gaslighting @flexiblegonewrong
Tom Kindlontomkindlon@disabled.social
2025-06-04

Postacute COVID-19 syndrome & fibromyalgia syndrome are associated with anti-satellite glial cell IgG serum autoantibodies but only fibromyalgia syndrome serum-IgG is pronociceptive

journals.lww.com/pain/fulltext

Screenshot from Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #Fibrositis

PAIN Postacute COVID-19 syndrome and fibromyalgia syndrome are associated with anti-satellite glial cell IgG serum autoantibodies but only fibromyalgia syndrome serum-IgG is pronociceptive — Berwick, Richard J. et al. "as RC2 (recovered) participants, reporting no pain or fatigue, demonstrated equally strong staining, anti-SGC staining titre alone seems insufficient to explain symptoms in PACS. Instead, high staining in the recovered PACS group likely indicates a persistent immunological imprint from recent infection (2-6 months prior)."
Tom Kindlontomkindlon@disabled.social
2025-06-02

Upcoming "#MECFS & #Fibromyalgia Self-Help Program" course.

cfsselfhelp.org/online-courses

Comment: I have no financial interest in this. I haven't done it myself but have heard people praise it. Not free but this is within the budget of many people.

#CFS #PwME #Fibro #FMS @fibromyalgia @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Join The Next Introductory Class Register now for classes that begin on July 7, 2025. Registration closes on June 30, 2025. Cost: $20.00. Register now
AlcorNews
2025-05-14

opex360.com/2025/05/13/les-emi
#BREAKING

defensedailydefensedaily@mstdn.social
2025-05-13

Ahead of Trump's Visit, U.A.E. Approved to Buy Chinook Helicopters Worth $1.32B

defensemirror.com/news/39474/A

#UAE #Chinook #DefenseSale #USUAE #FMS #MilitaryNews #TrumpVisit #F16 #MiddleEastSecurity #Boeing #Honeywell #Pentagon #ForeignMilitarySales #DSCA

WorlddefensereportWorlddefensereport@mstdn.social
2025-05-13

Ahead of Trump's Visit, U.A.E. Approved to Buy Chinook Helicopters Worth $1.32B

defensemirror.com/news/39474/A

#UAE #Chinook #DefenseSale #USUAE #FMS #MilitaryNews #TrumpVisit #F16 #MiddleEastSecurity #Boeing #Honeywell #Pentagon #ForeignMilitarySales #DSCA

Habrhabr@zhub.link
2025-05-12

Cryptohack. Решение Oh SNAP. Атака Флюрера-Мантина-Шамира (Fluhrer, Mantin, Shamir)

Приветствую, Хабр! В нескольких предыдущих статьях я рассматривал различные режимы шифрования для блочных шифров, постепенно сдвигаясь в сторону режимов, превращающих блочные шифры в потоковые. В новой статье в фокусе будет чисто потоковый шифр - RC4. Я расскажу о самом шифре, а также об атаке FMS и применении её для решения задачи Oh, SNAP с платформы Cryptohack.

habr.com/ru/articles/908094/

#rc4 #fms #cryptography #cryptohack #ctf

Tom Kindlontomkindlon@disabled.social
2025-05-04

🧵
From Chronic Living Therapy e-newsletter:

"Round up of articles spotted online in March/April 2025 that focus on the experiences of people with ‘psychologised’ or hard to diagnose health conditions."

chroniclivingtherapy.com/1-els

@chronicillness
@spoonies @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM
#chronicillness #chroniclife #spoonie

1/

Spotted in the news / online Read any articles or research of interest to therapists and counsellors? Please share them with us! We've rounded recent ones up up and added them to our website. Here's what we have from March and April 2025: Physiology for Psychology by Emily Cochrane of POTSUK on how this physiological condition gets misinterpreted and treated as 'anxiety'. #ThereforME published a piece by Ella Barnard who is lost for words trying to describe the reality of ME/CFS. The Smithsonian published an excellent article about how mental illness has become a scapegoat diagnosis for many women with serious physical health problems. And a fantastic piece of research from Australia looking at young people with ME/CFS and exploring how they face challenges building independence and forming their own identities when their paths diverge so much from those of their peers. Can't recommend this one enough! Read our roundup of March/April publications: https://chroniclivingtherapy.com/1-elsewhere-web/
Tom Kindlontomkindlon@disabled.social
2025-05-04

From Canada:

The gut microbiota promotes pain in fibromyalgia

cell.com/neuron/fulltext/S0896

"Transplanting gut microbiota from women with fibromyalgia into mice induces pain. It also induces immune activation, metabolomic changes, and reduced skin innervation"

@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #ChronicPain

Highlights • Transplanting gut microbiota from women with fibromyalgia into mice induces pain • It also induces immune activation, metabolomic changes, and reduced skin innervation • Gut microbiota promotes pain through several mechanisms Summary Fibromyalgia is a prevalent syndrome characterized by widespread pain in the absence of evident tissue injury or pathology, making it one of the most mysterious chronic pain conditions. The composition of the gut microbiota in individuals with fibromyalgia differs from that of healthy controls, but its functional role in the syndrome is unknown. Here, we show that fecal microbiota transplantation from fibromyalgia patients, but not from healthy controls, into germ-free mice induces pain and numerous molecular phenotypes that parallel known changes in fibromyalgia patients, including immune activation and metabolomic profile alterations. Replacing the fibromyalgia microbiota with a healthy microbiota substantially alleviated pain in mice. An open-label trial in women with fibromyalgia (Registry MOH_2021-11-04_010374) showed that transplantation of a healthy microbiota is associated with reduced pain and improved quality of life. We conclude that altered gut microbiota has a role in fibromyalgia pain, highlighting it as a promising target for therapeutic interventions.
defensedailydefensedaily@mstdn.social
2025-05-03

U.S. Approves $371M Sale of AIM-9X Sidewinder Missiles to Norway

defensemirror.com/news/39414/U

#Norway #Missiles #AIM9X #Sidewinder #USDefense #FMS #NATO #RTX #MilitarySale #DefenseNews #AirDefense #EuropeSecurity #DSCA #ArmsDeal #NationalSecurity

WorlddefensereportWorlddefensereport@mstdn.social
2025-05-03

U.S. Approves $371M Sale of AIM-9X Sidewinder Missiles to Norway

defensemirror.com/news/39414/U

#Norway #Missiles #AIM9X #Sidewinder #USDefense #FMS #NATO #RTX #MilitarySale #DefenseNews #AirDefense #EuropeSecurity #DSCA #ArmsDeal #NationalSecurity

Tom Kindlontomkindlon@disabled.social
2025-05-02

"'Twirl With Me, Mama!' by Melissa Beardall & Rebecca Nichols is a moving children’s book that shines a compassionate light on families living with #chronicillness ."

hazymaybooks.com/about-the-boo

See next post for more information on this book

@chronicillness
@spoonies #parenting #chroniclife #ChronicPain #Spoonielife
#hiddenillness #invisibleillness #ChronicIllnesses #Spoonies #Spoonie
#ChronicallyIll @mecfs
#MEcfs @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots

1/

Drawing of a young girl using a stethoscope on her mother who is in bed. Has the following text: "Mama says she sick. She doesn't look sick to me. She isn't coughing or sneezing like I do when I'm sick. "You need to go to the doctor so you can get better," I say. But mama isn't getting better.
Tom Kindlontomkindlon@disabled.social
2025-05-02

Recap of professionally-facilitated support group "Surviving Invalidating Relationships & Experiences"

batemanhornecenter.org/wp-cont

"by becoming sick with a #chronicillness we become a minority...based on the prevalence rate of these conditions"

#Spoonies @longcovid
#LongCovid @mecfs
#MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots @chronicillness
@spoonies
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Bateman Horne Center logo "Support Group: Surviving Invalidating Relationships and Experiences March 11, 2025 "
PandaPanda@toot.blue
2025-04-26

x.com/Yokko08768212/status/191

コロナ罹患後から急に体調不良が続き2年以上寝たり起きたりです。身体の痛みも続き、このまま生きてていいのか戸惑いながら生きる毎日でした。少しずつ回復し少し前を向いて生きられる様になってきました。
#LongCovid #MECFS #FMS
#コロナ後遺症 へ理解と支援を
#PCR検査と治療薬の公費負担を求めます

Serenityfreaksoutserenityfreaksout4@squeet.me
2025-04-26

Interessanter Artikel über die Zusammenhänge des menschlichen Darmmikrobioms und Fibromyalgie

Klingt für mich nach einem vielversprechenden Ansatz, um Fibromyalgie besser diagnostizieren und behandeln zu können. 💪

While these are merely the first steps in understanding the role of the gut microbiome in chronic pain and specifically FM, one might envision exciting future perspectives for better mechanistic understanding of FM, for the development of objective diagnostic aids and potentially for new therapeutic modalities.


Der ganze Artikel hier kostenlos:

clinexprheumatol.org/abstract.…

#Fibromyalgie #Fibromyalgia #FMS

Hacker Newsh4ckernews
2025-04-25

New LLM jailbreak bypasses all major FMs

hiddenlayer.com/innovation-hub

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