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Tom Kindlon @tomkindlon.bsky.social · 23h

Redox Status in Patients Suffering from Multiple Chemical Sensitivity (MCS): A Pilot Study

www.mdpi.com/2077-0383/14...

Image is screenshot from MCS-Aware November 2025 Newsletter

#MCS #MultipleChemicalSensitivity

Oxidative Stress Status in Patients with MCS (A Pilot Study)

J.Clin.Med.2025,14(17),6185; Published:

2 September 2025

This study, published in The Journal of Clinical Medicine, explored oxidative stress in MCS patients compared to healthy individuals, focusing on blood plasma and red blood cell markers. Results suggest oxidative stress plays a key role in MCS, especially through disruption of the red blood cells’ glutathione cycle. The research emphasises the importance of investigating the molecular mechanisms behind MCS, aiming to refine diagnosis and treatment. Insights into cellular oxidative imbalances could help explain the widespread dysfunction seen in those with MCS.

https://doi.org/10.3390/jcm14176185

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Tom Kindlon @tomkindlon.bsky.social · 5d

New US research:

Post-Exertional Symptom Exacerbation after Sub-Maximal Exercise in Individuals with #MyalgicEncephalomyelitis / Chronic Fatigue Syndrome & Post-Acute Sequelae of COVID-19

journals.lww.com/acsm-msse/ab...

#ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PostExertionalMalaise

Purpose:
In individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and post-acute sequelae of SARS-CoV-2 infection (PASC), physical activity can exacerbate symptoms for days-to-weeks, referred to as post-exertional symptom exacerbation (PESE). This study characterized the trajectory of PESE symptoms before and for 7 days after a sub-maximal exercise task in individuals with ME/CFS or PASC.

Methods:
Individuals with ME/CFS (n=30) or PASC (n=30) and matched controls (n=30) were recruited from a university hospital and the community setting. Participants completed a 25-minute moderate intensity exercise on a whole-body cycle ergometer. The trajectory of 8 commonly reported PESE symptoms (physical fatigue, mental fatigue, pain, physical function, flu-like symptoms, gastrointestinal symptoms, sleep dysfunction, anxiety) before and for 7 days after exercise.

Results:
There was variability in the proportion of those who experienced increased symptoms ranging from 46/60 reporting physical fatigue to only 18/30 reporting anxiety. There was no change in any of the symptoms across the 7-day period when analyzed individually. An aggregate score of 4-5 symptoms that includes physical fatigue, mental fatigue, physical function and flu-like symptoms, with or without pain, was more comprehensive in capturing maximal changes in PESE. Changes were greatest during the 72h post-exercise and for those with ME/CFS. The aggregate score shows 8/30 of individuals with ME/CFS and 12/30 with PASC show minimal-to-no increase in PESE, while 6-7/30 show increases greater than 3/10 points.

Conclusions:
PESE to a clinically relevant exercise task is variable in individuals with ME/CFS and PASC as submaximal exercise does not exacerbate symptoms for some, while modifications of intensity may be necessary to minimize PESE in others.

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RikkaPik @rikkapik.bsky.social · 11d

stigma of schizophrenia (my official diagnosis, but the PTSD therapy HELPED for a change- after 20- odd years) by horror movies (most slashers are spooky paranoid schizophreniacs), it is just not a battle I can stomach. I am so tired. Sorry for the vent, but I am having a bad Month. #ME/CFS

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RikkaPik @rikkapik.bsky.social · 11d

asthma (neither is resting down... and not doing that makes ME set my lower back on fire, so I have to make decisions there)... I think my health bingo card is full. I really planned on joining the fight to have ME accepted as the physical disorder that it is. But similarly to the fight against the

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RikkaPik @rikkapik.bsky.social · 11d

Another night of me waking up to panic attacks. This will be a huge drain on my energy. Well, c-PTSD was no fun before the pandemic. I do think I got my ME from the covid variant with the wild dreams. Every infection (with anything) brings them back up, too. Panic attacks are not helpful with

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RikkaPik @rikkapik.bsky.social · 13d

Ist jetzt alles Religion? Da hab ich als Atheistin ja nicht viel zu lachen...

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RikkaPik @rikkapik.bsky.social · 17d

Wahrscheinlich ist die Linie der AfD schlicht einfacher: ein bisschen Kulturkampf und man kann machen was man will... Christliche Werte und Sozialdemokratie sind soooo anstrengend im Vergleich (und teuer).

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RikkaPik @rikkapik.bsky.social · Oct 6

Ich bin dann mal weg, meine Gedanken neu zu sortieren. Ohne Worte.

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Tom Kindlon @tomkindlon.bsky.social · Oct 5

From ME Research UK:

#Dysautonomia tinyurl.com/mry8bkty can often co-exist with other conditions such as mast cell activation syndrome, Ehlers-Danlos syndromes, and small fibre neuropathy. Several are also considered to be ME/CFS comorbidities, so we will explore further during October.

#MEcfs

1/

DYSAUTONOMIA COMORBIDITIES
Dysautonomia often coexists with other conditions, including:
ME/CFS
Long COVID
Autoimmune conditions e.g. coeliac disease, lupus
Mast cell activation syndrome (MCAS)
Small fibre neuropathy (SFN)
Ehlers-Danlos syndromes (EDS) e.g. hypermobile EDS (hEDS)
Gastrointestinal disorders e.g. irritable bowel syndrome (IBS), gastroparesis Migraine disorders
Sleep disorders
INFORM. INFLUENCE. INVEST.
and much more... RESEARCH UK
SCO36942

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Ramin Nasibov @nasibov.me · Oct 5

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Dr. med. Hank Schiffers @leanhealth.bsky.social · Oct 5

Frage in einfachen Worten für Politiker:

Wenn Covid für Kinder so mild und Longcovid so selten ist warum hat dann Longcovid, lt der Autoren der Researching COVID to Enhance Recovery (RECOVER) Studie, Asthma als häufigste chronische Erkrankung bei Kindern in den USA abgelöst?

Why Are So Many Children Getting Long COVID?

Newsweek It’s been more than five years since the start of the COVID-19 pandemic, although millions of Americans, including children, are still affected by it today. More than one million&nbs…

www.unmc.edu

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Dr. med. Hank Schiffers @leanhealth.bsky.social · Oct 3

Randomisierte Studie mobile Luftfilter Schule

1) Reduktion krankheitsbedingter Abwesenheit 12,5%
2) Kosten 11€/d
3) cost benefit 1:9

Nicht inkludiert sind die zusätzlich in Skandinavien nachgewiesenen Reduktionen der elterlichen Fehltage um 30%

Und nu
@PrienKarin @ninawarken?

The Effect of Air Purifiers in Schools

www.rff.org

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Dr. med. Hank Schiffers @leanhealth.bsky.social · Oct 2

.4) die gesellschaftliche Last verstärkt sich mit jeder Reinfektion
5) haftungsrechtlich bedeutet es die Umkehr der Beweislast für alle Ärzte & Kliniken
6) aktuelle Impfungen sind NICHT die Lösung
Ich sage ihnen dass seid 2020. Der Lancet seit gestern

www.thelancet.com/journals/lan...

Long COVID is here to stay—even in children

Post-acute sequelae of SARS-CoV-2 infection (PASC, also known as long COVID) are complex, multisystem, long-lasting complications of SARS-CoV-2 infection that profoundly impact the daily life of those...

www.thelancet.com

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RikkaPik @rikkapik.bsky.social · Sep 29

I think, since medical students have said that they learn about ME in die media, not the university, those groups of people are the same.
And the answer is likely: not really.

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Tom Kindlon @tomkindlon.bsky.social · Sep 27

"Never-Words for Patients With Invisible Illnesses – Liza Di Leo Thomas, MD"

From:
When We Don’t Have All the Answers: #LongCOVID and the Need for Humility in Medicine

www.ochsnerjournal.org/content/25/3...

#invisibleillness #LongCovid #chronicillness
#hiddenillness #ChronicIllnesses

Table 2. Never-WordsforPatientsWithInvisibleIllnesses– Liza Di LeoThomas,MD Di Leo Thomas, L Never-WordPhrase Alternative Explanation “But you look fine.” “At least you don’t look sick.” “Great news! All your tests are negative!” “You can’t believe everything you see online. Let’s not diagnose you based on a TikTok influencer.” “At least you’re not bedbound, wheelchair bound, don’t have cancer, et cetera, et cetera, et cetera….” “Wedon’t knowmuchaboutthisillness. There’s nothing I can do for you.” “It must be frustrating to feel so awful.” “The goodnewsiswehaveruledout (A, B, C) by doing these tests. But I believe there is something wrong, and I will work with you to figure it out.” “Thank you for taking such an interest in your illness and advocating for yourself. Let’s talk about what you saw online.” “It sounds like you are suffering with this quite a bit. Can you explain how it has affected your quality of life?” “I realize the research on Long COVID is slow to come, andIcan’t imagine how frustrating that is for you. Let’s see whatwecandorightnowtotreat someofyoursymptomsandimprove your quality of life.” Telling patients they look fine may make themfeel like you are doubting their illness, even if you are not. Somepatients maynotfeel like it is great newsthat test after test is negative whentheyknowsomethingis absolutely wrong with them. Online communities have become ahuge source of support for patients with LongCOVIDandotherinvisible illnesses. Hearing someone else describe the same symptomscanbe incredibly validating. Avoid dismissing these sources outright. Avoid starting with “at least,”which can sound dismissive or invalidating. Instead, explore how the illness impacts the patient’s life. Even without definitive treatments, providers can offer symptom managementandhope. Acknowledging the patient’s frustration while focusing on what can bedoneisempowering.

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Tom Kindlon @tomkindlon.bsky.social · Sep 25

. @davetuller1.bsky.social :

More on Cochrane mess. In a June post, the exercise review author acknowledges the findings "may not apply" to those diagnosed with more recent ME/CFS definitions.This inadvertent admission makes it clear why a new review is absolutely needed
virology.ws/2025/09/25/t...

Trial By Error: Cochrane CFS/ME Exercise Review "May Not Apply" to Patients Diagnosed with Newer ME/CFS Definitions, Per Lead Author | Virology Blog

By David Tuller, DrPH It’s hard to keep up with everything going on in this field these days. So I missed the fact that Lillebeth Larun, the lead author beh ...

virology.ws

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RikkaPik @rikkapik.bsky.social · Sep 26

Well, kinda the right one to talk, ain't he?

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Tom Kindlon @tomkindlon.bsky.social · Sep 24

"Advice for people with suspected ME/CFS" from the influential NICE guidelines on ME/CFS (from UK) (2021)

www.nice.org.uk/guidance/ng2...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1.3 Advice for people with suspected ME/CFS
1.3.1
When ME/CFS is suspected, give people personalised advice about managing their symptoms. Also advise them:

not to use more energy than they perceive they have − they should manage their daily activity and not 'push through' their symptoms

to rest and convalesce as needed (this might mean making changes to their daily routine, including work, school and other activities)

to maintain a healthy balanced diet, with adequate fluid intake.

1.3.2
Explain to people with suspected ME/CFS that their diagnosis can only be confirmed after 3 months of persistent symptoms. Reassure them that they can return for a review before that if they develop new or worsened symptoms, and ensure that they know who to contact for advice.

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RikkaPik @rikkapik.bsky.social · Sep 22

I read some reports from patients on a German ME/CFS forum. I could not stay on it, it broke my heart to read about all the suffering.

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Tom Kindlon @tomkindlon.bsky.social · Sep 22

" @thesicktimes.org spoke with twelve people who went to rehabilitation clinics in Germany...patients feel pressured to partake in exercise-based therapies that can make their disease worse."

thesicktimes.org/2025/09/16/g...

Screenshot from Science for ME weekly update

#LongCovid #MEcfs

Germany
The Sick Times spoke with twelve people who went to rehabilitation clinics in Germany. The country’s insurance system pushes people to go through these clinics before they can access disability supports. Patients feel pressured to partake in exercise-based therapies that can make their disease worse.
Article | Thread

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Dt. Ges. für ME/CFS @dgmecfs.bsky.social · Sep 19

🎥 ME/CFS-Fachtagung 2025 des Fatigatio e.V. am 20.09.

Morgen findet ab 09:30 Uhr die diesjährige Fachtagung des @fatigatioev.bsky.social zu #MECFS in Hannover statt. Die Fachtagung wird online auf YouTube live übertragen.

(1/2)

zum Livestream: www.youtube.com/live/Tn1Tdo5...

ME/CFS-Fachtagung am 20.09.2025 (Live-Stream & Aufzeichnung): "Alles im Fluss...?" - Fatigatio e.V.

YouTube video by Fatigatio e. V.

www.youtube.com

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RikkaPik @rikkapik.bsky.social · Sep 15

Tolkien said about some prisoners having a duty to themselves to escape, if only in spirit. I will do fantasy. And I will keep up the fight as well as I can. Even if I can't keep up with others. I am used to that by now... ;)

RikkaPik @rikkapik.bsky.social · Sep 15

pull myself out of the mental gutters. I will not try to write about ME again, I am not strong enough. I applaud all who are. I will try to entertain myself and others, maybe I can do that better. Fantasy is my thing, even more so as I need to escape a reality of pain, exhaustion and crashes. Just

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RikkaPik @rikkapik.bsky.social · Sep 15

Like, people have induced symptoms in mice by introducing human antibodies- Isn't that a prove that it is not psychological in origin? How does one convince a mouse that it is sick when it is not? Make it make sense! So, I am, atm, burying myself in art, I started getting mentored and I hope to

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RikkaPik @rikkapik.bsky.social · Sep 15

unhelpful as he can (to not enable my delusions, maybe?) but a couple of weeks ago the neurological society of Germany released a statement that was very much: "Well, we need to check all the possible psychological issues with those patients, too! This disorder is just too complicated and dazzling!"

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