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.

Breathing Technique (Buteyko) Heals ME/CFS

Discussion in 'General ME/CFS News' started by PhoenixDown, Dec 5, 2015.

  1. PhoenixDown

    PhoenixDown Senior Member

    Messages:
    376
    Likes:
    691
    UK
  2. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,178
    MEMum, mango, Valentijn and 1 other person like this.
  3. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Messages:
    4,665
    Likes:
    5,480
    @sueami posted about her experience with Buteyko breathing in several threads.
     
  4. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    Perhaps this suggests that any effect Buteyko has had on apparent ME/CFS is actually an improvement in generalized fatigue as a result of low oxygenation from asthma or poor breathing or COPD or somesuch condition.

    There so much misdiagnosis in ME/CFS it's hard to know if any anecdotal treatment success is due to the treatment's effect on ME or whether it's affecting some other condition misdiagnosed as ME. We really can't tell at this point. Even the best and most experienced ME clinicians can't be certain of their diagnoses until we have a biomarker, although I'm not sure even a decent biomarker catches every case, so the specialists' clinical experience is still probably the best diagnostic tool.

    Since something like 99.9% of PWME worldwide are self-diagnosed, or diagnosed by worthless definitions (Oxford, CDC Empirical), or by physicians with no understanding of the illness or the criteria and who do no testing to rule out other conditions, it's nearly impossible to say that some treatment won't be effective for some group of people who believe they have ME/CFS. We really don't know if 99% of us have the neuroimmune disease ME and 1% have something else or the other way around. My guess is it's closer to 50/50 worldwide, so a large fraction of us might benefit from treatments that appear to have no logical scientific basis as a treatment for neuroimmune disease.

    ADs may alleviate all the supposed ME symptoms of a substantial number of patients (mis)diagnosed using Oxford criteria. So it's tricky to say no person diagnosed with, or who believes they have, ME can recover with ADs. To do so could be cutting off a lifeline for those people. That doesn't mean ADs alleviate the symptoms of the neuroimmune illness defined by the CCC or the ICC. The same could be true for any number of other treatments, mainstream or alternative. They could cure some people diagnosed with ME/CFS even if they don't cure ME/CFS, if you see what I mean

    What we have is one big fat mess. Misdiagnosis and the possibility of multiple distinct neuroimmune conditions lumped under ME/CFS leads to massive confusion about what works as ME/CFS treatment. Knowledgeable, experienced ME/CFS specialists are not treating ME/CFS, per se. They are treating all the symptoms, pathogens, and dysfunctions they can find in PWME, which is not the same thing.

    So while I want to roll my eyes at something like Buteyko, which has little to do with serious neuroimmune disease, curing ME/CFS, I have to acknowledge that it could indeed be effective for some subset of people (mis)diagnosed with CFS. What do I do with that? Those people should get a treatment that might help them, but it's not a treatment for ME/CFS, but they think they have ME/CFS, but.... :confused:
     
  5. Gijs

    Gijs Senior Member

    Messages:
    641
    Likes:
    1,296
    @SOC, i am not totally agree with you. Many ME/CFS/POTS patiënts have breathing problems like hyperventilation.
    Not het cause but a symptom of this disease. Buteyko could help very well for this problem. Maybe you don't have ME/CFS and think you have it? We don't even know what ME/CFS is and can't measure it. So your statement is inappropriate.
     
  6. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    There's a big difference between helping some symptoms and healing ME/CFS (as was claimed). I thought I was clear that many different treatments might help some people diagnosed with ME/CFS with some symptoms including symptoms that may (or may not) be actual ME/CFS symptoms. At the present time, hyperventilation is not a known symptom of ME/CFS. None of the known causes of hyperventilation are connected to neuroimmune disease. That doesn't mean some PWME and some people misdiagnosed with ME/CFS don't hyperventilate. Those people might benefit from something like Buteyko breathing. It does not follow that Buteyko treats ME/CFS, much less heals it. However, if it is a valid treatment for hyperventilation, then people (with ME or not) should be able to get that treatment.... for hyperventilation, not ME.

    Maybe I don't. I hope I don't. We don't know for sure who has ME/CFS or even what ME/CFS is. Frankly, I'd be thrilled to find out I don't have ME/CFS, but a different and treatable condition instead. I have absolutely no emotional investment in having ME. Unfortunately, my daughter and I have both been diagnosed with ME/CFS by three different top ME/CFS specialists over the years, so if we think the top biomedical clinicians have enough experience to know ME/CFS when they see it, then the odds that I actually have ME/CFS are pretty good. Still, I can hope.

    How so?
     
  7. lansbergen

    lansbergen Senior Member

    Messages:
    2,505
    Likes:
    2,710
    Tell me how it can help with dry pleuritis and when the two layers are grown together during the disease process.
     
  8. redrachel76

    redrachel76 Senior Member

    Messages:
    490
    Likes:
    717
    Israel
    I tried it. I got a bad relapse in the middle from the post exertional malaise of doing it.
    So I gave up.

    Travelling to the place was hard but even if I had been rich enough to get it done it at home, the act of having to sit up for a certain amount of time and exerting yourself with breathing exercises is difficult for moderate to severe M.E patients.
    I was the only non asthma patient there and the only one who got worse. All the asthma patients improved.

    This was circa 1998 and the doctor I went to was a Russian who was personally taught by and knew *the* original Buteyko himself. So it's not like I went to a dodgy practitioner.

    I didn't go back and strongly discourage anyone wasting their money like I did.
     
    natasa778, Effi, zzz and 1 other person like this.
  9. Gijs

    Gijs Senior Member

    Messages:
    641
    Likes:
    1,296
    @SOC, ME/CFS/POTS patiënts have orthostatic intolerance and hypocapnia, if you have hypocapnia you get breathing problems like shortness and hyperventilation .

    Hypocapnia is a biological marker for orthostatic intolerance in some patients with chronic fatigue syndrome.
    Dyn Med. 2007 Jan 30;6:2 Natelson BH, Intriligator R, Cherniack NS, Chandler HK, Stewart JM

    Hypertension. 2014 Jun;63(6):1302-8. doi: 10.1161/HYPERTENSIONAHA.113.02824. Epub 2014 Apr 7.
    Reduced cerebral blood flow with orthostasis precedes hypocapnic hyperpnea, sympathetic activation, and postural tachycardia syndrome.
    Del Pozzi AT1, Schwartz CE, Tewari D, Medow MS, Stewart JM.

    Maybe it is more the POTS group then the CFS group. As long there is no biomarker we don't know who have real ME. I think we have different diseases.
     
  10. Gijs

    Gijs Senior Member

    Messages:
    641
    Likes:
    1,296
    I talk about hyperventilation not pleuritis.
     
  11. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    This seems entirely consistent with what I've been saying -- some patients, if they have a particular symptom, could benefit from this. That's far from all ME patients. It's vanishingly far from a treatment that heals ME/CFS. There's a big difference between a symptom some people with ME/CFS diagnoses have and a symptom of ME/CFS specifically.

    I have symptoms/conditions that few PWME have (as far as we know). They may be related to ME, or they may not. Just because I have ME and those conditions and treatment helps me, that doesn't mean the treatment is for ME in general and certainly not that it will heal ME/CFS.

    I consider it very likely that there are different diseases currently diagnosed as ME/CFS, so if that's what you're saying, you'll not get disagreement from me. If you are saying you and I, in particular, have different diseases, that wouldn't surprise me, either.
     
  12. Gijs

    Gijs Senior Member

    Messages:
    641
    Likes:
    1,296
    @SOC, most we agree on but who of us have then the real ME you, me or other patiënts on this forum? :)
     
  13. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    I have no idea. :p Maybe all of us, maybe just a few. No way to know, really.

    IMO, without true PEM (not just uncomplicated exercise intolerance like you see in non-ME POTS, for example) it's not ME. Beyond that, it's hard to say. I'd expect neurological and immune manifestations, but that's a huge field.

    I suspect there is not a "true ME", but some number of similar-appearing illnesses that have all been lumped under one heading. It's quite possible once we have a better handle on the illness, "ME" will disappear entirely and conditions that were all called ME 30 years ago will be separated out into FM, PVFS, and a bunch of other new names.

    This does NOT mean that anyone with an unexplained illness has ME. I think we can be fairly safe (for the moment) in using the CCC or ICC definitions until we have some clearer biomarkers.
     
    PennyIA likes this.

See more popular forum discussions.

Share This Page