ive been on daily IV saline for 3.5 years now and it helps far more than just boosting my BP to help me sit up. My doctors theory is the sudden stretch on the baroreceptors changes the signals they sent. Reading about their role in the body makes a lot of sense but I never see it mentioned in M.E stuff. Has it been looked at?
Hello. Well without trying to be clever, there isn't any ME research as no one has a test yet for ME, so we have to go with CFS and CFS is of course all over the place in terms of findings because diagnosing people with ME on the basis they feel exhausted is going to lasso in various different reasons people feel exhausted, with only subsets of having your issues. Ergo the research on ME is always spare, as it's 'stolen' into other areas of medical research, such as POTS, even if many PWME PWCFS have POTS, or more likely, undiagnosed POTS
and or hypovolemia etc. However...I'll stick with CFS and baroreceptor function:
The observed increase in the sympathetic component of the baroreceptor feedback with even mild orthostatic stress in CFS patients indicates early sympathetic activation and may reflect diminished baroreflex reserve for more severe stressors. These changes further suggest that the baroreflex may have a diminished ability to buffer a variety of internal and external influences on arterial pressure, but particularly those related to upright activity and ambulation, in line with our previous report on the combined effect of orthostatic stress and isometric exercise in CFS patients (Wyller et al. 2008b). The function of the baroreceptor reflex has been addressed in two previous CFS studies. In a group of adolescent CFS patients and controls, Stewart (2000) reported significantly lower α-gain in the HF as well as the LF range among CFS patients, both during rest and during 70° head-up tilt. In adult CFS patients, Peckerman et al. (2003) reported enhanced decline in baroreceptor sensitivity upon standing as compared to controls. However, the sequential method adopted in the latter study does not allow separate estimation of LF and HF gain, making it most sensitive for parasympathetic heart rate control. Differences from the current study might be explained by different inclusion criteria, experimental protocols and mathematical algorithms. Taken together, however, like this study, they indicate a sympathetic predominance of baroreflex heart rate control during orthostatic stress in CFS patients.
Blood pressure variability and closed-loop baroreflex assessment in adolescent chronic fatigue syndrome during supine rest and orthostatic stress.
Eur J Appl Physiol. 2011 Mar; 111(3): 497–507.
Published online 2010 Oct 2. doi: 10.1007/s00421-010-1670-9
Vegard Bruun Wyller,corresponding author1 Riccardo Barbieri, and J. Philip Saul
https://link.springer.com/article/10.1007/s00421-010-1670-9
Patients with CFS had a greater decline in baroreceptor reflex sensitivity (BRS) during standing, although only those with severe CFS were significantly different from the controls.
Source:
Psychosom Med. 2003 Sep-Oct;65(5):889-95.
Baroreceptor reflex and integrative stress responses in chronic fatigue syndrome.
Peckerman A1, LaManca JJ, Qureishi B, Dahl KA, Golfetti R, Yamamoto Y, Natelson BH.
https://insights.ovid.com/pubmed?pmid=14508037
By design, all CFS and POTS patients experienced orthostatic tachycardia, often associated with hypotension. R-R interval and heart rate variability were decreased in CFS and POTS patients compared with control subjects and remained decreased with head-up tilt. Low-frequency (0.05-0.15 Hz) blood pressure variability reflecting vasomotion was increased in CFS and POTS patients compared with control subjects and increased further with head-up tilt. This was associated with depressed baroreflex transfer indicating baroreceptor attenuation through defective vagal efferent response. Only the sympathetic response remained. Heart rate variability declined progressively from normal healthy control subjects through syncope to POTS to CFS patients. Timed breathing and Valsalva maneuver were most often normal in CFS and POTS patients, although abnormalities in select individuals were found. Heart rate and blood pressure regulation in POTS and CFS patients are similar and indicate attenuated efferent vagal baroreflex associated with increased vasomotor tone. Loss of beat-to-beat heart rate control may contribute to a destabilized blood pressure resulting in orthostatic intolerance. The dysautonomia of orthostatic intolerance in POTS and in chronic fatigue are similar.
Source:
Pediatr Res. 2000 Aug;48(2):218-26.
Autonomic nervous system dysfunction in adolescents with postural orthostatic tachycardia syndrome and chronic fatigue syndrome is characterized by attenuated vagal baroreflex and potentiated sympathetic vasomotion.
Stewart JM
https://www.nature.com/articles/pr2000180
This paper discusses the development of a system to measure continuous cardiac baroreceptor measurement during a 45-minute 70-degree head-up tilt (HUT) of five groups of subjects suffering the following: chronic fatigue syndrome (CFS), CFS with fibromyalgia (CFS-FM), CFS with postural orthostatic tachycardia syndrome (CFS-POTS), controls with POTS (CON-POTS), and controls (CON). The duration of the test was 56-minutes, which included a five-minute supine baseline, a 45-minute HUT and a six-minute recovery period. The system was developed in LabView, and can provide a comparative time analyses of weighted BRSI averages. Baroreflex effectiveness index (BEI) was also investigated over the course of lags 0, 1 and 2 as well as an assessment of overall BEI performance between groups.
Source:
Continuous measurement of BRSI in chronic fatigue syndrome
The 26th Annual International Conference of the IEEE Engineering in Medicine and Biology Society.
D.L. Donnelly New Jersey Inst. of Technol., Newark, NJ, USA; R.H. Rockland ; S.S. Reisman ; K.S. Quigley
2004
https://ieeexplore.ieee.org/document/1403306
That's all I can find with a quick search. What I would say is, if you're on daily saline I hope your doctor gave you a blood volume test and if they didn't they should as you may have a condition misdiagnosed as ME CFS.
If you don't have hypovolemia or Addison's disease (misdiagnosed as ME CFS) then they shouldn't just pump
you full of saline daily and leave it! Presumably you've have your antidiuretic hormone measured? (ADH/Vasopression). Also have they run a 24hr Aldosterone, 24hr sodium urine also?
If you have the possibility, I'd considering asking for medical input on having a pituitary 3T MRI brain scan with contrast
if your pituitary hormones are out of whack but a standard head MRI shows nothing. Has anyone bothered measuring your hormones extensively? I ask as usually in ME CFS the answer is no! I'm always shocked at the amount of forum members who get useless tests (for ME CFS) like a full blood count, TSH/T4, LFT, U&E's and sent home....for life...with
''it's a mystery you're so sick'', or the old chestnut
''but all your tests are normal''. What doctors mean is, all the tests for the conditions you don't have, are normal - big difference.