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.

Newton:Reduced cardiac volumes in CFS associate with plasma volume, not length of disease

Discussion in 'Latest ME/CFS Research' started by Effi, Jun 25, 2016.

  1. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,551
    Europe
    full text: http://openheart.bmj.com/content/3/1/e000381.long

    Reduced cardiac volumes in chronic fatigue syndrome associate with plasma volume but not length of disease: a cohort study
    Julia L Newton
    Andreas Finkelmeyer,
    George Petrides,
    James Frith,
    Tim Hodgso
    Laura Maclachla,
    Guy MacGowan and
    Andrew M Blamire

     
  2. A.B.

    A.B. Senior Member

    Messages:
    3,734
    Likes:
    23,094
    Notably, these were Fukuda patients. I wonder how strong a referral bias there was. The authors seem to suggest that the patients were not specifically selected for cardiovascular abnormalities but this part isn't as specific as I would like.
     
    Invisible Woman and Valentijn like this.
  3. Navid

    Navid Senior Member

    Messages:
    467
    Likes:
    304
    The relationship between plasma volume and severity of fatigue symptoms suggests a potential therapeutic target in CFS.

    Are there any treatment recommendations to deal with this issue. Do we need to find a way to raise our plasma volume?

    I feel like there has been no movement at all on potential treatments in years. If a person (me) is intolerant to mostly every treatment they try; what can they do.

    Also here's an crazy question......are there researchers/dr's out there willing got take on guinea pig patients. Those of us desperate to try anything to get some tiny bit of improvement in QOL?

    Finally for patients using ampligen successfully. Did you just take a big leap of faith in trying the treatment or are there some tests or indicators that show it will help you, rather than make you worse.

    I cannot believe how hopeless this whole situation feels these days. Ever since the XMRV episode, it feels like there has been no concrete movement forward in treatments at all. Lots of talk and enthusiasm around increased activism, research, movies,etc. but nothing that really helps the severely ill get out of this hole of despair.

    Sorry for the "ranty downer" post, but really feeling hopeless these days...and even though I've been sick for 11years, the optimist in me can't believe there really is nothing to do to get better...even though that appears to be the reality at this point.
     
    MEMum, Mary, Invisible Woman and 7 others like this.
  4. Daisymay

    Daisymay Senior Member

    Messages:
    726
    Likes:
    3,955
    I know it's hard, I've been ill for 36 years.....I understand where you're coming from but just hold onto the fact that the research scene is the most hopeful it's ever been for ME, hopeful that we will get a breakthrough with the understanding and legitimising of ME and I believe some treatments to at the very least help. Hang in there Navid x
     
    MEMum, Mary, Invisible Woman and 6 others like this.
  5. daisybell

    daisybell Senior Member

    Messages:
    1,601
    Likes:
    7,355
    New Zealand
    This is a strong result which is nice to see. Even though it was less than 50 patients, the probability of the results being chance is the lowest I think I've seen in a paper on CFS in a while.... And hard to argue that we can think ourselves into this symptom. Plus I do like that the authors have specifically commented about how deconditioning doesn't explain the results.
     
    simeyss, MEMum, Mary and 7 others like this.
  6. voner

    voner Senior Member

    Messages:
    536
    Likes:
    840
    Hopefully some of our members with statistical background will check the statistics in this paper.

    The discussion section has some pretty interesting statements. Here are some quotes:

    PV=Plasma volume
    RCV= Red cell volume


     
    Last edited: Jun 25, 2016
    MEMum, Mel9 and Comet like this.
  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    1,987
    Likes:
    5,031
    USA
    Dr. David Bell (Lyndonville, New York) prescribed daily IV saline for his CFS patients for years. The patients had some type of permanent shunt put in their veins so they could just hook themselves up to an IV and not be poked on a daily basis. When he retired and could no longer prescribe this treatment, no other doctors prescribed it and all these patients who were doing well with daily saline IVs went downhill. (I'm recalling all of this from a lecture he gave in Seattle a year ago, recorded on YouTube.) He very much believed that there was problem with low volume.
    Dr. David Bell on Low Blood Volume in Chronic Fatigue Syndrome
    http://www.healthrising.org/forums/...blood-volume-in-chronic-fatigue-syndrome.234/

    He also had some success with recommending G-suits for his patients who had orthostatic intolerance, which would help improve blood volume to the brain.
    See http://www.oiresource.com/gsuit.htm

    There have only been a few threads here at PR regarding the G-suits:
    http://forums.phoenixrising.me/index.php?search/25784046/&q=gsuit&o=date


    Here's Dr. Bell's lecture:
     
    Last edited: Jun 25, 2016
    MEMum, Daisymay and justy like this.
  8. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,514
    I'm feeling a bit more than usual of an emotional desperation for some sort of treatment at the moment. Noticed a bit of a flare up on talk of "a potential therapeutic target"... come on, I'm getting old!
     
  9. kangaSue

    kangaSue Senior Member

    Messages:
    836
    Likes:
    910
    Brisbane, Australia
    That's interesting from a gut dysmotility point too. I know of a couple of people who have severe g.i. dysfunction with having gastroparesis and have found that getting daily IV saline infusions through a permanent port helps a lot in moderating the gut dysmotilty symptoms.
     
    Mij, MEMum, ahimsa and 4 others like this.
  10. Ben Howell

    Ben Howell OMF Correspondent

    Messages:
    736
    Likes:
    8,214
    U.K.
    Though its using Fukuda, Julia Newton consistently puts out interesting research, despite overwhelming difficulties here in the UK. I really hope she is commended for her efforts, she really is a great researcher going 'against the grain' over here. She is a quiet champion for the cause.

    Thank you Julia et al.


    B
     
    simeyss, BurnA, MEMum and 11 others like this.
  11. A.B.

    A.B. Senior Member

    Messages:
    3,734
    Likes:
    23,094
    If something clearly shows up in Fukuda patients this presumably means it's an important aspect.
     
    MEMum, Sean, Valentijn and 1 other person like this.
  12. Ben Howell

    Ben Howell OMF Correspondent

    Messages:
    736
    Likes:
    8,214
    U.K.
    For sure, but I would like to see it replicated with perhaps the Canadian criteria though, and see if the results were more significant. The fact that the results were from Fukuda and had this degree of dysfunction is important and worrying when using one of the least strict criteria. It's good, interesting research, as we are used to from Julia.


    B
     
    Last edited: Jun 26, 2016
    MEMum likes this.
  13. panckage

    panckage Senior Member

    Messages:
    626
    Likes:
    739
    Vancouver, BC
    If somebody is bed bound they become deconditioned very quickly, in a matter of months. I haven't read the paper but the above looks inadequate to make any relation between deconditioing and the results.

    I don't think this is the same thing but in non-cfs patients it talks about bed rest leading to an excessive fall in stroke volume. It also talks about it leading to orthostatic intolerance: http://circ.ahajournals.org/content/96/2/517.long

    They either should have had a deconditioned control group or they should remove the implication from the conclusion IMO
     
  14. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,787
    Well, reading the paper would be a better place to start then, perhaps? It's open access, not very long, and the link is in the original post.

    The patients in the present study weren't bedbound, so I'm not sure what you think the relevance is.

    At any rate, there is quite a bit of evidence from other researchers that proves deconditioning has fuck-all to do with the development or maintenance of ME symptoms. And then there's my own personal experience of (temporarily) being stronger after weeks of OI-induced bed-rest, not weaker. And such OI episodes appear quite suddenly, and certainly not after any decrease in activity.
     
    simeyss, BurnA, tokyo99 and 8 others like this.
  15. Ben Howell

    Ben Howell OMF Correspondent

    Messages:
    736
    Likes:
    8,214
    U.K.
    Nailed it.


    B
     
    simeyss, MEMum and Mel9 like this.
  16. panckage

    panckage Senior Member

    Messages:
    626
    Likes:
    739
    Vancouver, BC
    Ok I read it
    Any condition that reduces activity contributes to deconditioning. This is not controversial

    The length someone has CFS does not indicate its severity (except in the relatively rare progressive cases). Any deconditioning effect would occur at the beginning of the illness when a person first restricts their activities. Measuring patients 4-14 years after they have the illness means that by that time conditioning has become a static variable.

    its like doing a study of 30-45 year olds on what percentage of people have driver's licenses and then concluding that age has no effect on the percentage of people who have a driver's license. And then it goes on to say that for people 10-30 year old that age doesn't affect the percentage of people who have a driver's license :p
     
    simeyss, Simon, Mel9 and 1 other person like this.
  17. Sean

    Sean Senior Member

    Messages:
    3,250
    Likes:
    17,960
    Depends in part on how active the bed bound state is.

    Big difference between somebody who is awake and alert and otherwise healthy and active but is just temporarily bed bound due to a broken leg, and somebody who is in a coma and completely passive and atonic. The former is still a lot more physically active than the latter (with deconditioning in the former probably also exhibiting a somewhat more localised than global pattern).

    IIRC, at the extreme low end of the activity spectrum serious deconditioning can develop in just 2-3 weeks.

    Maybe. Not all patients just suddenly stop all activity level when they first get sick, or reduce it so far that they can't prevent significant deconditioning. The level of regular physical activity needed to prevent significant deconditioning is not that high. I certainly met that minimum standard for the first 3-4 years of being sick, as did many patients I have talked to, but we still ended up serious chronic cases.

    At most, classical deconditioning in ME/CFS is a secondary factor that is largely out of control of patients. Patients don't stop moving because they have become deconditioned. They stop moving because they have to, then become deconditioned, to the extent that they do so (and that is an open question at the moment, it is not clear that patients' metabolic profile matches that of classical deconditioning, our physiological response to increased physical activity certainly doesn't).
     
    simeyss, MEMum, zzz and 6 others like this.
  18. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,787
    Your statement went beyond that, with the suggestion that deconditioning was responsible for reduced stroke volume and accompanying symptoms.

    According to your expert opinion? Because my experience is that I did not restrict my activities. I probably stayed too active during the first week of a bad flu (pushing myself to go to practice test and review classes), and rested like a normal human being for a week afterward (certainly not staying in bed). This was followed be an apparent inability to walk at a normal pace without getting sick afterward, or to think clearly when sitting up for a couple hours during classes.

    There is no "activity restriction". There's disability hitting first, and forcing limitations which we fought for too long. That fighting made us sicker, maybe permanently, and mild deconditioning certainly may have resulted. But as is shown by VO2max results, even our single CPET results for moderate and severe patients show values far too low to be explained by any level of deconditioning. And our 2-day CPET results document a sudden drop in performance during the PEM period, which is obviously not attributable to deconditioning.

    Frankly I don't understand how any ME patient could think that deconditioning plays a major role in their disease, except perhaps during or immediately after a CBT brain-washing course. (And it is an objectively observable disease, by the way, not a subjective "illness" or vague "condition").
     
    simeyss, BurnA, MEMum and 10 others like this.
  19. Ben Howell

    Ben Howell OMF Correspondent

    Messages:
    736
    Likes:
    8,214
    U.K.
    I cannot fathom this obsession with deconditioning. There is no evidence for its implication in M.E, certainly not pathophysiology at all, to the contrary there is evidence against it as mentioned.


    I cant help but think that anyone who believes it to be a serious, active part of their condition, in a pathological sense, has a very different illness to the one I am familiar with.



    B
     
    simeyss, BurnA, MEMum and 7 others like this.
  20. Hutan

    Hutan Senior Member

    Messages:
    1,069
    Likes:
    6,418
    New Zealand
    Of course deconditioning is, at most, a secondary cause of symptoms experienced by PWME. ME comes first. For PWME who still walk around, it is probably of very little significance.

    But to me, the point @panckage is making isn't controversial. The study included only people who had had CFS for 4 years or more. I think most people with ME/CFS, especially those with a sudden onset, will have made the biggest decrease in their activity levels by year 4.

    So, any change as a result of deconditioning is likely to be most apparent in the first 4 years of the illness. And this study didn't have any people who had only been ill for 4 years or less. So, it doesn't have the data to draw a conclusion about deconditioning from the observed lack of relationship between the length of illness (4 to 14 years) and cardiac volumes.

    This study will not stop the wittering on about deconditioning being the cause of CFS. Instead, people just diagnosed with an infection known to trigger ME/CFS need to be followed for a couple of years. There needs to be a comparison between people who go on to have ME/CFS and those who don't, in terms of activity levels before and during the acute illness and cardiac measures throughout the study period.
     
    Last edited: Jun 27, 2016
    simeyss, panckage and Sidereal like this.

See more popular forum discussions.

Share This Page