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  1. K

    Childhood neurodivergent traits, inflammation and chronic disabling fatigue in adolescence: a longitudinal case–control study 2024 Quadt et al

    I sometimes do an exercise of turning the causation around, e.g. Children with neurodivergent traits suffer from higher levels of childhood inflammation … Because they struggle to communicate that they are feeling unwell and symptoms that are not obvious to parents could go untreated. Or...
  2. K

    Salt

    Oh, I forgot to mention that increasing salt intake in POTS is presumed to address hypovolemia (chronic low blood volume), i.e. you want to move the patient from hypovolemia to euvolemia (normal blood volume). Some of the dangers from increased salt consumption that have been found in the...
  3. K

    Measuring cerebral hypoperfusion with Doppler ultrasound

    On a personal note, I have to report that my daughter’s Doppler ultrasound testing did not happen. It is a very long story stretching back a year, so I won’t go into it, but her specialist’s poor communication scuppered her chances of getting a clear result, so she cancelled the test. We are...
  4. K

    The problems with POTS - ME/CFS Skeptic blog

    @ME/CFS Skeptic , did you see this paper from 1986? It has been referenced in recent papers as describing what would now be called POTS. https://www.acpjournals.org/doi/10.7326/0003-4819-104-3-298?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed Judging by the title...
  5. K

    Normal versus abnormal: What normative data tells us about the utility of heart rate in postural tachycardia, 2019, Baker and Kimpinski

    Dr Peter Novak has commented that he suspects that the majority of chronic orthostatic intolerance is not accompanied by orthostatic abnormalities in blood pressure or heart rate. But he did describe two new types of chronic OI that fit this profile, so we have to consider that he may be...
  6. K

    Normal versus abnormal: What normative data tells us about the utility of heart rate in postural tachycardia, 2019, Baker and Kimpinski

    I had a look in the textbook but it doesn’t seem to cover the decision on the 30 BPM, unfortunately.
  7. K

    Normal versus abnormal: What normative data tells us about the utility of heart rate in postural tachycardia, 2019, Baker and Kimpinski

    @Helene , oh dear, I imagine the specialist you saw in Calgary was Dr Raj, and now I have referenced him as saying that the 30 BPM is questionable, and that the presence of orthostatic symptoms should be the main consideration rather than quibbling over a couple of BPM.
  8. K

    Normal versus abnormal: What normative data tells us about the utility of heart rate in postural tachycardia, 2019, Baker and Kimpinski

    I am not sure whether blood pooling is visible “from the outside”. I know people with POTS often report blotchy or red legs and POTS specialists mention acrocyanosis, but I don’t know that not having these signs means no pooling. It’s covered briefly in this article...
  9. K

    Normal versus abnormal: What normative data tells us about the utility of heart rate in postural tachycardia, 2019, Baker and Kimpinski

    I’m afraid I can’t source this to a specific lecture, but Dr Satish Raj, when talking about TTT studies, mentioned that POTS patients feel unwell during the test, and then possibly faint, but healthy subjects feel fine during the test, and then possibly faint. I will see whether I can find the...
  10. K

    Normal versus abnormal: What normative data tells us about the utility of heart rate in postural tachycardia, 2019, Baker and Kimpinski

    Conversely, people who have done it before and suspect that they are going to feel quite unwell could also have a raised heart rate.
  11. K

    Normal versus abnormal: What normative data tells us about the utility of heart rate in postural tachycardia, 2019, Baker and Kimpinski

    I’ve heard several autonomic specialists say that thet are not happy with the 30 (or 40) BPM threshold. It may be that eventually cerebral blood flow will be the key diagnostic criteria. Thread on study pointing in that direction...
  12. K

    Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most ME/CFS Patients with a Normal Heart Rate & Blood Pressure ..., 2024, van Campen

    Dr Satish Raj (and others) found abnormalities in the renin–angiotensin–aldosterone system (RAAS) in POTS patients. It has been called the renin–aldosterone paradox. https://www.ahajournals.org/doi/10.1161/01.CIR.0000160356.97313.5D?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub...
  13. K

    Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most ME/CFS Patients with a Normal Heart Rate & Blood Pressure ..., 2024, van Campen

    Nimodipine (calcium channel blocker) has been thought to increase cerebral blood flow by being selective for dilating cerebral blood vessels. However, there has been further research in recent years questioning whether it is as selective as previously thought. Also, it will lower blood...
  14. K

    Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most ME/CFS Patients with a Normal Heart Rate & Blood Pressure ..., 2024, van Campen

    On measuring blood volume: There is a recently accredited medical device that can measure total blood volume quickly and easily: https://detalo-health.com/ It uses carbon monoxide rebreathing (a tiny amount) as a tracer. It is not a new method, but the ability to purchase it as an...
  15. K

    Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most ME/CFS Patients with a Normal Heart Rate & Blood Pressure ..., 2024, van Campen

    Here’s a couple of studies on compression garments that might be of interest: Compression Stockings Improve Cardiac Output and Cerebral Blood Flow during Tilt Testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Patients: A Randomized Crossover Trial Compression Garment...
  16. K

    Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most ME/CFS Patients with a Normal Heart Rate & Blood Pressure ..., 2024, van Campen

    And I suppose the question to answer is: Is there not enough blood getting to the head, due to low blood volume, blood pooling in the lower body, exaggerated postprandial effects (found in some POTS patients), poor activation of veins that should be squeezing it all upwards. Or is the blood...
  17. K

    Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most ME/CFS Patients with a Normal Heart Rate & Blood Pressure ..., 2024, van Campen

    With 91% of patients in the study showing reduced cerebral blood flow, it seems that it would be worthwhile for everyone with ME/CFS to carefully try some low-risk orthostatic intolerance treatments, given that cerebral blood flow testing is not that easy to access.
  18. K

    Why are psychologists and rehabilitationists so unaware that their research, questionnaires and treatment can cause harm?

    My daughter was an editor before becoming too sick to work. She noticed when doing psychological and health questionnaires that some questions did not make sense, or did not allow for acccurate answers. Some of them were outdated (referring to social activities that haven't been popular since...
  19. K

    Different kinds of abnormalities of heart rate and blood pressure

    @Jonathan Edwards, you are right, I don't think there is any evidence suggesting that strengthening leg muscles will improve muscle pump function in people with POTS enough to make a noticeable difference to lower body venous pooling and hence OI symptoms. I was just repeating what I had heard...
  20. K

    ME Association funds development of new protocol for Dysautonomia

    I don't know whether it is a good study design or not, but Dr Satish Raj is doing this one: https://live-research.ucalgary.ca/participate/calgary-salt-postural-orthostatic-tachycardia-syndrome-casa-pots-reb23-0779
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