Sleep & Breathing and have categorised this spectrum based on the CDC 2015 criteria:
ME/CFS Phenotype (21% of fatigued patients): Characterised by the three core symptoms,persistent fatigue, PEM) & unrefreshing sleep,plus either cognitive impairment or #orthostaticintolerance.
Don't run before you can walk... and don't walk before you can stand, don't stand before you can sit, and don't sit before you can be propped up in bed with your legs up without crashing from it. #babysteps
#severeME #POTS #orthostaticintolerance #chronicillness #spoonie #wheelchairuser #disabled
Showers Shouldn’t Cost Your Energy You know, showers are deceptively hard. Abby Oct 26, 2025 Showers are hard. Not just inconvenient, not just “ugh, another thing on the list,” but hard in a way that touches everything: your nervous system, your muscles, even the quiet rhythm of your breathing. The kind of hard that hits every nerve ending and every muscle fiber because your body is already stretched thin, like a rubber band that’s been left taut for far too long. If you’re living with Long COVID, ME/CFS, POTS, other energy-limiting conditions, or just heightened sensory sensitivity in general, what feels like a small, everyday act to most people can become a deeply demanding negotiation with your own body. It’s not about discipline, or laziness, or even “trying harder.” It’s about energy: the subtle currency your body spends on every movement, every sensation, every drop of water cascading over skin that’s already carrying too much.
Some tips on showering and washing from a sympathetic & knowledgeable occupational therapist who specialises in ME/CFS, Long Covid & other energy-limiting chronic conditions
onelifelivedwell.substack.com/p/showers-sh...
#MEcfs #LongCovid #POTS #OrthostaticIntolerance #CFS #PwME #Spoonies #Spoonie
![Photo of somebody having a tilt table test
The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test
In ME/CFS patients with POTS during tilt testing with measurements of both the CO [cardiac output] and the CBF [cerebral blood flow], two different patterns were observed: 1) appr. two-thirds of patients had an almost 1:1 relation between the %CBF reduction and the %CO reduction. This CBF reduction is abnormal, as in healthy controls the CBF reduction for a given CO reduction varies between 1:3 and 2:3, and may indicate endothelial dysfunction with an inability of cerebral vessels to adequately dilate in the presence of a CO reduction. Appr. one-third of patients showed a limited reduction in CO together with a substantial increase in HR. In these patients, there was no relation between the CO and CBF reduction. These data suggest the presence of a hyperadrenergic response. If this mechanism is proven by norepinephrine levels, the CO is a robust measure to distinguish between hyperadrenergic and non-hyperadrenergic responses.
Read more here>>](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreigp7tofmfyfm3xgmgohtg5gpmm6tdb7sbxqrrlwgikdkidezasua4)
Photo of somebody having a tilt table test The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test In ME/CFS patients with POTS during tilt testing with measurements of both the CO [cardiac output] and the CBF [cerebral blood flow], two different patterns were observed: 1) appr. two-thirds of patients had an almost 1:1 relation between the %CBF reduction and the %CO reduction. This CBF reduction is abnormal, as in healthy controls the CBF reduction for a given CO reduction varies between 1:3 and 2:3, and may indicate endothelial dysfunction with an inability of cerebral vessels to adequately dilate in the presence of a CO reduction. Appr. one-third of patients showed a limited reduction in CO together with a substantial increase in HR. In these patients, there was no relation between the CO and CBF reduction. These data suggest the presence of a hyperadrenergic response. If this mechanism is proven by norepinephrine levels, the CO is a robust measure to distinguish between hyperadrenergic and non-hyperadrenergic responses. Read more here>>
The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test
www.mdpi.com/2077-0383/14...
Screenshot from the January 2026 AMMES newsletter
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS #OrthostaticIntolerance
Blue and yellow background #TeachMETreatME logo Photo of Dr. Peter Rowe @MEActMaryland logo on the bottom righthand corner QR codes Slides https://tinyurl.com/RoweSlidesMECFSpedsNeuroAnat Sources https://tinyurl.com/RoweSourcesMECFSpedsNeuroAnat Transcript: https://tinyurl.com/RoweCCMECFSpedsNeuroAnat
Neuroanatomic Considerations in Pediatric ME/CFS
QR code
#NEISVOID
#neuro #neurology
#tinnitus #orthostaticintolerance #POTS
#meaction
Transcript: tinyurl.com/RoweCCMECFSp...
KEY POINTS (2/3)
~ Many of these anatomic problems can present with fatigue & orthostatic intolerance as prominent problems, overlapping with ME
~Connective tissue laxity is a risk factor for both ME & for many neuroanatomic abnormalities
#orthostaticintolerance
#connectivetissue #laxity
Mechanical Basis findings are integral to #EDS, #Marfans and other connective tissue disorder and disease patients - and issues like #MCAS and mast cell disorders, dysautonomias like #POTS and #OrthostaticIntolerance
Our second presentation on Mechanical Basis issues: youtu.be/lIK7-mBA7Pc?...
3/6
#POTSAwareness 👉 ❗I'm adding a disclosure for the salt recommendation as I feel this graphic is misleading slightly. The kind of salt you use is important! You must use Himalayan or Celtic Sea Salt. There are no risks with these salts and they help you hydrate appropriately. DO NOT USE IODIZED TABLE SALT. Salt is an essential element for human health via its role as an electrolyte. Celtic salt has more magnesium and moisture Himalayan salt contains more iron and potassium. Magnesium supports muscle function and hydration, while iron contributes to pink salt's hue. 💙 Managing Orthostatic Intolerance 💙 HYDRATION: Drink at least 3 liters of water daily. SALT INTAKE: 7-10 grams per day (consult with a healthcare provider). COMPRESSION GARMENTS: Waist-high garments or abdominal binders. DIETARY CONSIDERATIONS: Consider individualized diets based on specific symptoms and food sensitives. SLEEP: Elevate the head of the bed by 3-6 inches. Credit: MERC #Dysautonomia #MySeveralWorlds #POTSAwareness #ChronicIllness #OrthostaticIntolerance
Managing #OrthostaticIntolerance
HYDRATION: 3+ liters of water daily
SALT INTAKE: 7-10 grams per day
COMPRESSION: Waist-high garments/ abdominal binders
DIET: Individualized diets based on specific symptoms/food sensitives
SLEEP: Elevate head by 3-6 inches
Via: MERC
#Dysautonomia #POTSAwareness
Orthostatic Intolerance Overview with resources for individuals, caregivers, and healthcare providers. Download at BatemanHorneCenter.org.
It’s POTS Awareness Month!
#OrthostaticIntolerance (OI) includes #POTS, orthostatic hypotension & more. Our OI Overview covers evaluation (Passive Standing Test, EKG), lifestyle approaches, meds, and further resources.
🔗 https://bit.ly/4pCeOoA
#POTSAwarenessMonth #Dysautonomia #MERC
- LC & co-existing POTS experience lower physical activity & capacity vs to those with LC alone. During a 6 minute walk test, POTS patients had significantly higher heart rates & shorter walking distances.
- #Orthostaticintolerance: the core symptom cluster of POTS & a major driver of disability.
Image description: Graphic of someone with stars around their head representing dizziness. Big graphic of the letter O, forming the word - O is for Orthostatic Intolerance. A-Z of ME/CFS. ME Association logo (bottom right)
O is for Orthostatic Intolerance. Orthostatic Intolerance is the medical name for having difficulty or being unable to remain in a standing position. The cause may be related to problems regulating blood flow upon sitting or standing from a reclined position and is a very common ME/CFS symptom. It can be accompanied by dizziness, light-headedness, fainting, blurred vision, and nausea. For people who are severely affected, OI can be extremely debilitating. A-Z of ME/CFS.
O is for Orthostatic Intolerance (OI).
To understand more about Orthostatic Intolerance and how it can be managed, download our free booklet: meassociation.org.uk/literature/items/orthost...
#pwME #MECFS #OI #OrthostaticIntolerance #Dizziness #Lightheadedness #Fainting
Yep! And there are 80 year old folks who can run rings around folks with #MEcfs and #OrthostaticIntolerance!
One of my friends is 85 and she still goes to the gym. She has some medical issues but doesn't need to rest lying down, doesn't need a seat in the shower, can stand in line, etc.
Central Illustration: Overview of the trial
Iranian multicentre trial
Using Compression Stockings to Prevent Recurrence of Vasovagal Syncope: A Randomized Sham-Controlled Trial
www.jacc.org/doi/10.1016/...
"The results do not support routine use of thigh-length ECS [elastic compression stockings]"
#VVS #OrthostaticIntolerance #OI
You can also read the ME Associations booklet on Orthostatic Intolerance for free here: https://meassociation.org.uk/geo2
#MECFS #pwME #OI #OrthostaticIntolerance #MyalgicE #Research
OMF's Melbourne ME/CFS Collaboration published a paper on the results of a systematic review looking at cerebral blood flow in #MECFS and #orthostaticintolerance (OI). 118 studies, including over 9000 participants, were incorporated in the systematic review.
ow.ly/QZjw50WNfjt
Cerebral blood flow changes in A ME/CFS and OI vs healthy controls, and B ME/CFS with OI vs ME/CFS without OI. Seven and 2 articles which studied OI only and ME/CFS + OI combined respectively did not report the difference in cerebral blood flow compared to healthy controls (Panel A). Four articles which studied ME/CFS + OI combined did not report the differences in cerebral blood flow between ME/CFS patients with OI compared to ME/CFS without OI (Panel B). CBF: cerebral blood flow, ME/CFS: myalgic encephalomyelitis/chronic fatigue syndrome, OI: orthostatic intolerance
Cerebral blood flow changes in A ME/CFS & OI vs healthy controls, & B ME/CFS with OI vs ME/CFS without OI
From:Mapping cerebral blood flow in ME/CFS & orthostatic intolerance: insights from a systematic review
translational-medicine.biomedcentral.com/articles/10....
#MEcfs #OrthostaticIntolerance
Do all individuals with PoTS have a low blood pressure? Short answer: No. IL In fact people with PoTS (postural orthostatic tachycardia syndrome) typically have a normal blood pressure (BP) when experiencing symptoms. Furthermore, BP can be elevated. 1 Hence... Low BP is NOT required to diagnose PoTS. The hallmark feature is tachycardia (elevated heart rate). Low BP upon standing can indicate other issues, such as postural (orthostatic) hypotension. Recap Diagnostic requirements for PoTS: A persistent heart rate increase of at least 30 beats per minute (or 40 for adolescents) within the first 10 minutes of standing. No significant BP drop. Symptoms when upright. RESEARCH SCO36942 INFORM. INFLUENCE. INVEST.
From ME Research UK @meresearchuk.bsky.social
As promised to a commenter last month, we have published an article clarifying the relationship between blood pressure and PoTS (a common ME/CFS comorbidity): bit.ly/potsandbp
#POTS #OrthostaticIntolerance
Episode 2: Pediatric Orthostatic ME/CFS: a Focus on Management
tinyurl.com/RoweTranscri...
#orthostaticintolerance #POTS #dysautonomia
www.acep.org/emultrasound...
TCD is an excellent tool for objectively assessing orthostatic changes in cerebral hemodynamics in patients with #POTS, #orthostaticIntolerance, etc. Just do it in your PAIS clinic!
MDPI: Journal of Clinical Medicine: The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test
https://www.mdpi.com/2077-0383/14/11/3648
#pwME #MECFS #MyalgicEncephalomyelitis #OrthostaticIntolerance #OI
OMF’s Melbourne ME/CFS Collaboration is conducting a study on cerebral blood flow in people with ME/CFS and how it might influence symptom severity and post-exertional malaise.
Read more about the study on our website 👉 ow.ly/ir5E50VWng7.
#MECFS #Orthostaticintolerance #MECFSresearch #PEM
A female presenting person reclines in bed with the legs raised, and is checking the Lumia app to explore blood flow changes in this posture. Lumia tracks blood flow to the head with an in-ear wearable.
Our May Newsletter is out with news about NASA, Direct Sync for Lumia, DysCourse, & more!
mailchi.mp/lumiahealth....
#wearlumia #lumiawearable #bloodflow #NASA #bloodflowrestrictionbands #Hytro #lumia #pots #orthostaticintolerance #LongCOVID #pwme #mecfsawareness #dysautonomia
Apropos #LongCovid, went to see a cardiologist for #ExerciseIntolerance, #OrthostaticIntolerance and #PEM without the subject of #COVID_19 or #LongCovid ever being mentioned and that's despite us wearing #FFP3 respirators during the consultation...
Bizarre that one can see a cardiologist for #ExerciseIntolerance, #OrthostaticIntolerance and #PEM without the subject of #COVID_19 or #LongCovid being mentioned and that's despite wearing #FFP3 during the consultation...
Image showing tips for managing orthostatic intolerance: Drink 3+ liters of water daily, 7–10g salt/day (with medical advice), Wear compression garments, Follow an individualized diet, Raise head of bed 3–6 inches.
🌟 Struggling with dizziness or rapid heart rate when upright? The OI Overview helps patients & providers recognize & manage Orthostatic Intolerance.
📘 loom.ly/izkdURE
💙 Donate to MERC: www.omf.ngo?form=merc
#POTS #MECFS #LongCOVID #OrthostaticIntolerance @batemanhornecenter.bsky.social
When your Fitbit thinks you’ve run a marathon but all you did was shower.
That’s #LongCOVID #orthostaticintolerance. It’s not just being ‘out of shape’ it’s your autonomic nervous system misfiring, making basic activities feel like endurance sports.
Rest isn’t laziness is rehab!
#longcovid #pots
I don't know if this will help anybody, but I cope with my orthostatic intolerance (symptoms in an upright position) by sitting crosslegged or in half lotus seat. It is way less taxing then sitting in a chair. #me/cfs #orthostaticintolerance
