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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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orthostatic intolerance

  1. SWAlexander

    Orthostatic Intolerance after COVID-19 Infection: Is Disturbed Microcirculation of the Vasa Vasorum of Capacitance Vessels the Primary Defect?

    Abstract Following COVID-19 infection, a substantial proportion of patients suffer from persistent symptoms known as Long COVID. Among the main symptoms are fatigue, cognitive dysfunction, muscle weakness and orthostatic intolerance (OI). These symptoms also occur in myalgic...
  2. C

    Anyone found treatments that resolve/help orthostatic hypertension?

    Hi everyone I know there have been various threads discussing the ins and outs of why BP goes up or down for ME/CFS patients. This thread is for anyone who has found a treatment, whether medication or supplement, that actually improves or removes an increase in BP upon standing. My BP while...
  3. M

    What is the connection between orthostatic intolerance and impaired oxygen extraction?

    I often see ME/CFS patients that undergo exercise tests to be diagnosed with two problems: orthostatic intolerance (preload failure) and impaired oxygen extraction (mitochondrial dysfunction). They seem to be pretty well connected, but I've never seen anyone explaining which one is driving the...
  4. C

    Orthostatic Intolerance in Long-Haul COVID after SARS-CoV-2: A Case-Control Comparison with Post-EBV and Insidious… (van Campen & Visser, 2022)

    Orthostatic Intolerance in Long-Haul COVID after SARS-CoV-2: A Case-Control Comparison with Post-EBV and Insidious-Onset Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients Abstract Background: As complaints of long-haul COVID patients are similar to those of ME/CFS patients and as...
  5. C

    Physiological assessment of orthostatic intolerance in chronic fatigue syndrome (Natelson et al, 2022)

    Physiological assessment of orthostatic intolerance in chronic fatigue syndrome Natelson et al, 2022 Abstract Background Orthostatic intolerance-OI is common in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-ME/CFS. We used a 10-min passive vertical lean test as orthostatic challenge-OC...
  6. Pyrrhus

    Compression Stockings Improve Cardiac Output and Cerebral Blood Flow during Tilt Testing in ME/CFS (van Campen et al., 2021)

    Another study from van Campen, Rowe, and Visser! Compression Stockings Improve Cardiac Output and Cerebral Blood Flow during Tilt Testing in ME/CFS (van Campen et al., 2021) https://doi.org/10.3390/medicina58010051 Main points: Without compression stockings, patients experienced a 25% drop...
  7. SWAlexander

    Orthostatic Symptoms and Reductions in Cerebral Blood Flow in Long-Haul COVID-19 Patients: Similarities with Myalgic Encephalomyelitis/Chronic Fatigue

    Abstract Background and Objectives: Symptoms and hemodynamic findings during orthostatic stress have been reported in both long-haul COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but little work has directly compared patients from these two groups. To investigate the...
  8. Pyrrhus

    Orthostatic Intolerance (OI) Basics: Dysautonomia of Blood Vessels, Low Blood Volume, and Baroreflexes

    I just read a good overview article covering all the basics of orthostatic intolerance: Common Syndromes of Orthostatic Intolerance (Stewart, 2013) https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC3639459/pdf/peds.2012-2610.pdf (or https://dx.doi.org/10.1542/peds.2012-2610) This paper starts...
  9. Pyrrhus

    Orthostatic intolerance: POTS, hypotension and more. Webinar with professor Peter Rowe 19.10.21

    Orthostatic intolerance: POTS, hypotension and more. Webinar with professor Peter Rowe 19.10.21 Peter Rowe talks about the different types of orthostatic intolerance, and about how to manage and treat OI.
  10. SNT Gatchaman

    Sex-Specific Characteristics of the Microcirculation

    Authors: Virginia Huxley and Scott Kemp Published: July 27 2018 DOI: 10.1007/978-3-319-77932-4_20 PubMed Central link Chapter link (free access) Full book link (pdf, paywall) Abstract The requirements of metabolizing tissue are both continuous and variable; accordingly, the microvasculature...
  11. nerd

    Cerebral blood flow remains reduced after tilt testing in myalgic encephalomyelitis/chronic fatigue syndrome patients

    Published: 23 September 2021 Authors: C. Linda M.C. van Campen, Peter C. Rowe, Frans C. Visser doi: 10.1016/j.cnp.2021.09.001 Highlights Abstract
  12. Shanti1

    Infusion time for IV saline- does anyone know what the typical infusion time is for 1L saline for ME/CFS?

    I will be trying this today and am wondering if flow rate can impact how well it works since I am gathering that some of the benefit may be from baroreceptors in the blood vessels detecting extra pressure....
  13. nerd

    Chronic Fatigue Syndrome and Cardiovascular Disease: JACC State-of-the-Art Review

    Natelson BH, Brunjes DL, Mancini D. Chronic Fatigue Syndrome and Cardiovascular Disease: JACC State-of-the-Art Review. J Am Coll Cardiol. 2021 Sep 7;78(10):1056-1067 doi: 10.1016/j.jacc.2021.06.045 PMID: 34474739 Abstract
  14. RyeRyeBread

    Today's a high HR day... Anyone else?

    I woke up this morning, put on my HR monitoring smart watch (been trying to better monitor my HR, for pacing + OI purposes), and realized pretty quickly that today was not going to be a good day - in terms of OI symptoms and a high HR. This has happened a few times before - some days my HR was...
  15. waif

    Have to drink tons and tons of water or I'm dizzy

    Hi all, Im extremely thirsty all the time and I have to drink a LOT of water, frequent urination. At night I pee nonstop, never wet the bed or even come close. Just the need to go dramatically increases. I have h-eds. Is this a CFS sx? I feel like I have to drink water moving around or...
  16. Pyrrhus

    ME/CFS Patients with Joint Hypermobility Show Larger Cerebral Blood Flow Reductions during Orthostatic Stress Testing... (van Campen et al., 2021)

    The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with Joint Hypermobility Show Larger Cerebral Blood Flow Reductions during Orthostatic Stress Testing Than Patients without Hypermobility: A Case Control Study Hypermobility in ME/CFS: effect on cerebral blood flow (van Campen...
  17. Pyrrhus

    Deconditioning does not explain orthostatic intolerance in ME/CFS (van Campen, Rowe, and Visser, 2021)

    Deconditioning does not explain orthostatic intolerance in ME/CFS (van Campen, Rowe, and Visser, 2021) https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-021-02819-0 Excerpt: I thought the title statement should have been obvious to people by now, but apparently not...
  18. Rebeccare

    Salt tabs: Favorite brands? Dosage?

    It turns out that, after a lifetime of trying to minimize salt, it's really hard to take in enough sodium just through my diet! It's too bad that I find V8 rather nauseating. My doctor suggested salt tabs. When I asked about brands and dosage he just shrugged and said: "Just take whatever...
  19. Pyrrhus

    Exercise Intolerance: Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS (Joseph et al., 2021)

    A new publication by the team of Phillip Joseph, Anne Oaklander, and David Systrom, which I personally find exciting. Insights from Invasive Cardiopulmonary Exercise Testing of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Joseph et al., 2021)...
  20. xebex

    Small fibre neuropathy weirdness?

    I haven't been diagnoses with SFN, mainly because i haven't bothered to go to Doc as i have no pain which seems weird. What i do have is numb skin on my ankles so when i shower the sensation of the water on my skin is different to that of the rest of my legs, I also seems to be loosing hair on...
  21. Pyrrhus

    Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis... (Van Campen et al. 2020)

    A new publication from Van Campen, Rowe, and Visser on the effect of sitting up in severe ME: https://www.mdpi.com/2227-9032/8/4/394 Earlier this year they published a similar study on the effect of tilting the head in severe ME...
  22. Murph

    Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline: A case study (Davenport 2020)

    Cardiopulmonary responses to exercise in an individual with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during long-term treatment with intravenous saline: A case study Article type: Research Article Authors: Davenport, Todd E.*; a; b | Ward, Michael...
  23. Murph

    Cerebral Blood Flow Is Reduced in Severe ME/CFS during a 20 degrees head up tilt test (Van Campen et al 2020)

    Cerebral Blood Flow Is Reduced in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients During Mild Orthostatic Stress Testing: An Exploratory Study at 20 Degrees of Head-Up Tilt Testing C Linda M C van Campen 1 , Peter C Rowe...
  24. Mimicry

    OI and mood fluctuations

    I’ve noticed that my mood drops when I’m upright (sitting, standing, doing chores) long enough. I get irritable, anxious and depressed, but when I lie down my mood gets better quickly. I wonder if it has to do with OI and decreased blood flow to the brain. Do you guys experience this symptom? I...
  25. Cipher

    Compression pants alleviating POTS

    I stumbled upon this Reddit thread today regarding compression pants alleviating POTS: He used Roadbox Men's Compression Pants according to the thread.
  26. Pearshaped

    for those who got worse with mestinon

    Dr.Systrom seems to have quite a success with Mestinon on his patients. I'd be interested to hear what others WHO GOT WORSE on Mestinon found to be helpful. Im also wondering if you are mild/moderate or severe and how onset of ilness was.My naive hope is to find similarities in our group and...
  27. Dakota15

    POTS Treatment / Salt Tabs & Electrolyte Powder

    Hey PR - I just had a quick question. My CFS/ME Specialist advised me to take Metoprolol for POTS and also suggested to increase my salt intake to 2-4 grams a day with increased fluids. Specifically she suggested for me to add in electrolyte powder or to add in salt tablets. Does anyone...
  28. mattie

    Poll: Mestinon Trial

    A bit late, but I promised to report about Mestinon Trial (@echobravo) My new GP takes M.E. seriously. :thumbsup: Not only that, he allows me to trial Mestinon without going through a specialist which would be the normal route for this kind of off-label medication use. It works well for a...
  29. ahimsa

    NASA 10-minute lean test: Testing for orthostatic intolerance (OI) in ME/CFS patients (video)

    The Bateman Horne Center has posted about research using the NASA 10-minute lean test: https://batemanhornecenter.org/nasa-10-minute-lean-test-2/ Here's a quote from the web page: And here's the video from that page: I have not watched the whole thing but it looks interesting. I do...
  30. purrsian

    Is it hard to convince docs to give IV saline?

    I've got a GP appointment tomorrow and I'd like to ask about trying IV saline, even just once. I've been having GI problems so she told me to use osmolax, but I've started feeling pretty bad. Looked up how it works, which is by holding water in the intestines so it's excreted, making the stool...