Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Meadow: Reducing Orthostatic Intolerance with Oral Rehydration in Patients with ME/CFS

Discussion in 'Active Clinical Studies' started by mango, Feb 21, 2016.

  1. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,974
    Reducing Orthostatic Intolerance with Oral Rehydration in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    Marvin Meadow, New York Medical College

    DESCRIPTION (provided by applicant): We and others have shown that a majority of younger patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have orthostatic intolerance (OI), the inability to tolerate orthostatic stress such as prolonged standing. OI in ME/CFS comprises postural tachycardia syndrome (POTS) in which symptoms occur along with excessive upright heart rate, and neurally mediated hypotension (NMH) in which symptoms occur along with an upright fall in blood pressure.

    The causes of OI are diverse but are clearly initiated by postural contraction of central blood volume (BV) by gravitational translocation of 500-800 mL of blood from the upper to the lower body. Intravenous central BV expansion with isotonic saline is commonly and effectively used to reduce OI regardless of etiology, but has complications if used long term. Usual forms of oral hydration fail to provide similar benefit. Interestingly, a specific isotonic oral rehydration solution (ORS W.H.O. formula), making use of co-transport of glucose and sodium, has been shown to efficiently rehydrate cholera patients suggesting an ability to increase central BV rivaling intravenous fluids.

    Since the circulatory effects of saline or ORS BV expansion are incompletely understood, we propose to study the neurovascular physiology of fluid loading during orthostatic stress in ME/CFS patients with POTS or NMH, comparing results with healthy control subjects.

    We hypothesize that equal volumes of ORS is not inferior and may be superior to intravenous saline infusion in increasing intravascular and interstitial fluid volume and improving orthostatic tolerance.

    Using noninvasive measurements of heart rate and blood pressure by Finapres and oscillometry, cardiac output and peripheral arterial resistance by inert gas rebreathing, cerebral blood flow velocity by transcranial Doppler ultrasound, and regional fluid shifts by impedance and venous occlusion plethysmography, we have acquired preliminary data in ME/CFS patients with OI demonstrating superior restoration of orthostatic tolerance with ORS.

    We will recruit patients aged 15-29 years who have confirmed ME/CFS with OI, including 15 with NMH and 15 with POTS, and compare them to 15 healthy volunteer subjects.

    In Specific Aim 1 we will measure BV by Daxor iodinated albumin technique before orthostatic stress imposed by step-wise lower body negative pressure (LBNP) to measure the threshold for OI. Relative changes in BV using serial hematocrits in OI patients will be compared to data from control subjects similarly tested.

    In Specific Aim 2, all subjects will be randomized to receive saline or ORS in a cross over study. On one day, total BV and neurovascular properties will be measured in patients and control subjects before and 1 hour after completing one liter administration of intravenous normal saline infusion or ORS. On another day (separated by 1 week), we will repeat measurements using the other hydration route. We will perform LBNP on each day following saline or ORS to determine whether orthostatic intolerance and circulatory physiology are improved similarly with equivolumic IV saline or ORS hydration.

    Public Health Relevance Statement:
    PUBLIC HEALTH RELEVANCE: We and others have shown that many younger patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have orthostatic intolerance (OI), i.e., they can't tolerate prolonged standing.

    OI in ME/CFS is often accompanied by either postural tachycardia syndrome (POTS) in which standing results in an excessive heart rate, and neurally mediated hypotension (NMH) in which standing causes a fall in blood pressure and fainting.

    Intravenous fluids can alleviate these symptoms, but is difficult to administer; oral fluds fail to provide the same benefit. We would therefore like to test the effectiveness of an oral rehydration solution (ORS W.H.O. formula) making use of co-transport of glucose and sodium, to reverse these symptoms in ME/CFS subjects with POTS or NMS, and will compare these results with healthy control subjects.

    Project Terms:
    Accounting; Acute; aged; Albumins; Blood; Blood Flow Velocity; Blood Pressure; Blood Volume; Cardiac Output; Cerebrovascular Circulation; Cholera; Chronic Fatigue Syndrome; Cross-Over Studies; Data; Doppler Ultrasound; Effectiveness; electric impedance; Electrolytes; Etiology; falls; Fluid Shifts; glucose transport; healthy volunteer; Heart Rate; Hematocrit procedure; Hour; Hydration status; Hypotension; improved; Inferior; Infusion procedures; Ingestion; Intercellular Fluid; Intravenous; intravenous administration; Isotonic Exercise; IV Fluid; Liquid substance; Lower Body Negative Pressure; Measurement; Measures; Mediating; Methods; Noble Gases; Normal saline; Oral; ORALIT; Oscillometry; Osmolar Concentration; Patients; Peripheral; Peripheral Resistance; Physiology; Plasma; Plethysmography; Postural syncope; pressure; Presyncopes; programs; Property; public health relevance; Randomized; Recruitment Activity; Regional Blood Flow; Rehydration Solutions; Rehydrations; Relative (related person); Resistance; Respiration; response; Rest; restoration; Route; Saline; Salts; Sodium; Sodium Chloride; Staging; Stress; Stress Tests; Symptoms; Syncope; Syndrome; Tachycardia; Techniques; Testing; Tilt-Table Test; Time; Venous

    Project Start Date: 1-FEB-2016
    Project End Date: 31-JAN-2018

    Administering Institutes or Centers: NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE

    Total Funding: $246,000

    Source/more info:
    https://projectreporter.nih.gov/project_info_description.cfm?aid=9013077&icde=28277141
     
    Avengers26, ahimsa, waiting and 11 others like this.
  2. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,974
  3. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,974
  4. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,161
    UK
    Very interesting, @mango - thanks for posting. :thumbsup:

    I couldn't see the dose of ORS they're proposing - can anybody?
     
    aimossy and Mel9 like this.
  5. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,161
    UK
    Wow, Cort's article says NINDS (i.e. the NIH) is giving Medows $246,000 to study how to increase blood volume in ME/CFS.

    That's more like it!
     
    ahimsa, Valentijn, shannah and 2 others like this.
  6. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,161
    UK
    I can't see where you'd get this stuff in the UK. There seem to be oral rehydration salt in the British National Formulary but they're lower in salt because UK people aren't generally as low on salt as in places where they get cholera.

    Anybody got any ideas?
     
    aimossy likes this.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,161
    UK
    I'm quite excited about this - I've always wanted to try IV saline for my OI.
     
    keenly and aimossy like this.
  8. Asa

    Asa Senior Member

    Messages:
    175
    Likes:
    526
  9. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,161
    UK
    Asa and aimossy like this.
  10. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,876
    Likes:
    5,287
    Scotland
    @Sasha, not sure if this is the most up to date recommendation from the WHO. This formula dates back to 2002. [Edited to add: it ties in with the info @mango found]

    Trisodium citrate can be bought online. I'm pretty certain you won't be able to get pure KCl for obvious reasons but Tesco's reduced sodium salt is 51% NaCl and 48% KCl, so you should be able to add extra NaCl to keep the proportions right.

    http://image.slidesharecdn.com/mana...child-pregnant-women-10-638.jpg?cb=1364650661


    [​IMG]
     
    Last edited: Feb 21, 2016
  11. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,161
    UK
    So I just bought some own-brand oral rehydration salts from Boots the Chemist and it's in sachets. You mix one sachet with 200ml water, which doesn't seem much. Each sachet has 3.58g of glucose, 276 mg of sodium and 157 mg of potassium.

    I wonder what dose Dr Medows is using?

    I wonder what dose PWME who have OI get of IV saline?
     
    Mel9 likes this.
  12. taniaaust1

    taniaaust1

    Messages:
    11,875
    Likes:
    12,622
    Sth Australia
    ". On one day, total BV and neurovascular properties will be measured in patients and control subjects before and 1 hour after completing one liter administration of intravenous normal saline infusion or ORS."

    it says 1L saline or ORS.. so I've taken that to mean they will do 1L of the oral solution too.
     
    Sasha likes this.
  13. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,161
    UK
    So I should glug a litre...
     
  14. taniaaust1

    taniaaust1

    Messages:
    11,875
    Likes:
    12,622
    Sth Australia
    Those sachets can be an issue if one needs to drink a lot as they have a limit of how much they say you can have per day.

    Whenever I need to have IV saline.. I need 2 Litres to fix my OI and POTS for a while (enough to normalise things on BP/heart testing when I stand up for 1 minute) . I've only once got away with just 1 Litre.

    For myself. taking electrolytes isn't equal to having a saline IV. I just pee the electrolytes almost straight out. This still happens to a fair degree even with me taking florinef (thou that does help some)
     
    Last edited: Feb 22, 2016
    Valentijn and Sasha like this.
  15. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,161
    UK
    What do PWME and OI do who get IV saline on an ongoing basis? Do they have a litre a day? My impression is that it's twice a week or something.
     
  16. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,161
    UK
    Useful to know - I'll phone the pharmacy.

    Do you have it regularly or just in some sort of OI crisis?
     
  17. taniaaust1

    taniaaust1

    Messages:
    11,875
    Likes:
    12,622
    Sth Australia
    yeah good idea to check. I got told that by the prison dr.. he said it was either 6 or 8 sachets (I forget which though I guess it could vary with brands).


    that's after I'm on my feet too long or its warm and I POTS crash.. so yeah OI crisis.. but that is on top of me already drinking a lot (salt, loading and having extra potassium.. I got to avoid the glucose due to my insulin issues). I guess if I was having it daily 1L could be okay then.
     
    Sasha likes this.
  18. taniaaust1

    taniaaust1

    Messages:
    11,875
    Likes:
    12,622
    Sth Australia
    It lasts only 24-48 hrs at the most.. so some do have daily. I think those who do saline IVs twice a week, often only do that that much as it just would be too tiring to be going in to clinic and getting daily or second day. It really depends too what the dr is willing to do... I had a clinic offer for me to be able to have once a week as that was their clinic infusion morning (but its too far away so I couldn't take up the offer). If I was able, I'd do daily.
     
    Sasha likes this.
  19. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,161
    UK
    Phoned the pharmacy and they didn't recommend taking it in such a large amount - their ingredients don't map exactly onto the WHO ones.

    :(
     
  20. lnester7

    lnester7 Seven

    Messages:
    2,348
    Likes:
    3,349
    USA
    I use what they give babies when they have tummy bug (Pedyalite) it really does wonders (it is expensive) and it really works, BUT you have to learn not to overdo, In my case, I get pressure in the head and feel like acid is spilling out of it. So I know when to back off. I can do one to one and half a day (I have to back off on water by equal amount).

    I am under doctor supervision so I do check my electrolytes balance every 3 months. I have never gone over on potassium / sodium but I do take florinef which does depletes Potassium.
     
    Sasha likes this.

See more popular forum discussions.

Share This Page