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Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
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Klimas Conference Video 3: Voices of Hope

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 11, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Sasha

    Sasha Fine, thank you

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    Thanks for this report, Jody. I watched that video a while back and I'm sure it wasn't easy to summarise!

    I latched onto one thing from that talk, which was to have a go at going gluten-free for a while to see if it had anti-inflammatory effects. I've been doing it for ten days now, but from the very first day my chronic sinusitis cleared up enough for me to lie on my side at night. For years I haven't been able to do that because my nose would become congested within a few minutes and I'd have to lie on my back in order to be able to breathe. Very surprising to me to get a good result so quickly. Who knows what these small gains add up to...
  3. Jody

    Jody Senior Member

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    Sasha

    I have gone the gluten-free route for about a decade, as part of a low carb regimen that works well for me. Going low carb also meant avoiding grains, and therefore gluten. I couldn't believe the change within a matter of days. One of the changes was a reduction in a sortof low key sense of anxiety that had been with me since childhood. The feeling of vibrating that began with ME/CFS decreased substantially. Numbness and tingling too. Stomach issues like cramping and pain that had appeared with ME/CFS disappeared.

    I don't have celiac disease and likely tests would not show any problems. But changing my diet showed me. I can "cheat" occasionally. Pizza for instance.:) But not very often, or I have symptoms start up.

    For those who are sensitive to gluten, this can really transform things.

    I'd also like to mention my experience with meat was the opposite of Dan's ... just in case there are any readers who think they must avoid meat to recover. That may well be the case for many. But there are also many of us who get sicker without meat. The main thing, and I know the three guests would agree, is to find what works for you, and stay with it.
    Valentijn likes this.
  4. Sasha

    Sasha Fine, thank you

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    Yes, I got sicker when I tried to avoid meat. I've also gone grain-free as well as gluten-free and hence accidentally low-carb but haven't noticed any benefit.

    That was kind of the frustrating thing about that presentation by the patients - all trying different things, no doubt on all sorts of treatment regimens from Dr Klimas at the same time, all with different disease profiles...
    Valentijn likes this.
  5. William Holder

    William Holder

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    BS - I seriously doubt either of these three had CFS - vitamin supplements - a sleep aid - a VO2 test? Give me a break.
    This looks like an attempt to show progress where there really is none. If some doctor told me I just had to take more vitamins or get more exercise - I'd be tempted to break her nose. That's the same advice I've been getting for 18 years from former friends (they don't hang around when you can't play anymore) and my family. I and probably a lot of others here can vouch that this is BS and it doesn't create any admiration on my part for this doctor. If she doesn't have anything than say so - don't parade someone around who can bike 30 miles every other day - that's a highly trained athlete. If I could bike a few miles three times a week I'd consider myself cured.
    The doctor is right about one thing CFS is more pronounced after physical or mental stress. Our systems are broken.
    I truly, truly, truly, truly, truly wish that vitamins or a little more exercise could make me better - this kind of BS, especially from doctors needs to stop.
  6. redrachel76

    redrachel76 Senior Member

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    Thank you Jody. It's great that I have got the opportunity to read about Nancy Klimas. I only knew her before as head of the CFS association. I have to be brutally honest. From this report I think she is not a good doctor. I would not chose to go to her.
    In the 3 case reports - one was a 60 year old woman who is still working well at 67 and her claim of having no immune system at all then suddenly getting well by a few magic supplements does not sound like CFS. The 2nd case had a big improvement on Ashtok Gupta's nonsense of "retraining" the brain. The third patient- Dan, I am completely confused about. How could a VO2 max test make him get better?
    The whole thing was just nutrition and stress relief. There was nothing on low blood volume, POTS, what specific immune abnormalities are found to exist etc.
    Please don't think I am ungrateful to you for reporting. In fact I appreciate the chance to read this because I did not know much about Nancy Klimas.
    I just felt unhappy with what Nancy Klimas said.
    Blue likes this.
  7. redrachel76

    redrachel76 Senior Member

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    I only now read William Holder's comment. It's exactly what I wanted to say.
    I'm disgusted by her saying that she's "going eastern" for treatments and research. How about funding that gene research that was dropped or Rituximab beyond Norway's paltry funding, or testing blood volume and formulating a tilt test or SPECT scan that can diagnose CFS to 90+% accuracy. I'm surprised the audience were such wimps and did not ask tougher questions. I went to a local conference with a similar stress/exercise doctor and the audience was just as bad.
  8. Jody

    Jody Senior Member

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    Sasha

    Yeah it can be frustrating. But I think it's the reality of ME/CFS, and the fact that there are likely many different conditions under that umbrella. Seeing an array of people with different conditions that respond to some different treatments is a reminder that there are a number of different things that work for different folks. Hearing the different possibilities may help those who maybe haven't heard of some of these methods, that may also work for them.
  9. Jody

    Jody Senior Member

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    Redrachel

    I'm glad to have provided the opportunity for you to read about the session.
  10. Jody

    Jody Senior Member

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    Redrachel

    Because my experience has been that such "eastern" treatments have made a difference for me, I was happy to hear that someone is willing to incorporate such methods.

    The fact that it may not work for everyone doesn't change the fact that these things help many people with ME/CFS. Alot of alternative methods that use supplements and so forth do often help people with chronic conditions. That does not mean that they are not seriously ill. I was so sick I could hardly talk and spent years in my bed most of the time.

    I saw specialists and got no helpful suggestions from them. My naturopath has been the one who has helped me to gradually recover more and more of my life. Acupuncture, chiropractic and supplements as well as dietary changes have made enormous changes for me.

    I am glad that a whole range of treatments are not being ignored, when for many people they can bring healing, whether in whole or in part.
  11. jimells

    jimells Senior Member

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    I'm glad I didn't travel to Florida to get this advice. If only I were well enough to have more than a couple of squash plants...

    Jody, thanks for your report, I'm sure it was a lot of work, but I don't find the conference very encouraging.
  12. Jody

    Jody Senior Member

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    Jimells

    Hopefully there will things in the other videos I'll be writing up that will offer something helpful.
    jimells likes this.
  13. lnester7

    lnester7 Seven

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    I am on their protocol, but they add medicine when needed. I am very happy with my progress and I am at a 9 right now (with meds) it has taken them one year. They have very basic vitamins (COQ10,C,b12,Fish oil) the rest I am is medicine (Thyroid, antiviral, LDN, Sleep Meds, inmune modulator, Midodrine, Florinef). The only things I still have restrictions in is: extreme Heat like sauna, Sun exposure, Running (I can walk up to 5miles, try to do at least 2miles a day).

    Yes I have CFS used to have extreme low NK cell (which are low normal now), Low T cell, High Bcell, Dysautonomia, HH6v reactivation, EBV (current new one), Cosaxie (Has been cured). Parvo (no idea I forgot to ask or check the tests). I have Baaaaaaaaad PEM, but it has been much better since I take midodrine.
  14. jimells

    jimells Senior Member

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    What I find so puzzling is the huge discrepancy between your experiences and this conference. Your personal story is more compelling than what's on the video. It's almost like there's your Dr Klimas and team as well as an evil twin who promotes GET and CBT. How can that be???
    Valentijn likes this.
  15. Valentijn

    Valentijn Activity Level: 3

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    I think that one was probably due to finding a heart rate limit due to the VO2 testing. So by staying under that limit, he avoids triggering crashes.
  16. Valentijn

    Valentijn Activity Level: 3

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    I think this sounds very similar to some of the worse CBT/GET stuff. And I'm not sure what she means by it making us "perpetuate [our] illness".
    I think this highlights a major difference between the Klimas approach and CBT/GET: she's trying to find an objective and clear limit to our activities which should not be exceeded (because it triggers disabling symptoms), versus "gradually increase activity until you stop thinking you're sick" (because you really just have an exercise phobia).

    Due to the extensive harm caused by the CBT/GET crap, I really really do not like it when proper ME/CFS researchers are incautious with their language regarding perpetuation and exercise. I think Klimas has had a bit of a problem in this area lately, but reading everything in context, her message on the subject is a matter of pacing, not GET.

    I'm also very interested in the theories about an opportunity for some improvement if we don't exceed a determinable heart rate. I'd probably have to stop walking upstairs to give it a proper try, but it might be worthwhile to see what happens.
    jimells likes this.
  17. Starfive

    Starfive

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    maybe I missed something...but is there any mention of the unbearable pain that many of us suffer from? I would hope cfs/me doctors would talk about pain treatments and how they differ from patient to patient, if antivirals help the pain, etc.
    jimells likes this.
  18. jimells

    jimells Senior Member

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    I tried a heart rate monitor in 2011 until the non-replacable battery in the chest strap died. I found it helpful, but it did not stop crashes due to emotional stress, such as the never-ending attempts by state agencies to cancel my meager benefits. I find it hard to believe that many of us can experience big gains in functionality simply by meditating and watching our heart rate.
    redrachel76 likes this.
  19. Valentijn

    Valentijn Activity Level: 3

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    Me too, but I'm willing to give it a shot.

    Of course, now I'm having a POTS episode and just sitting with my feet up sends me over the recommended level. :confused:
  20. SOC

    SOC Moderator and Senior Member

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    I, too, found these patient stories somewhat puzzling. First and foremost, "some supplements" and Gupta "brain retraining" were never even suggested to me by Dr Rey (Dr Klimas' partner). Like Inester, I've been advised to take those basic vitamins plus vitamin D, but mostly my treatment is prescriptions for sleep, pain, low blood volume, hypothyroid, viruses. Other than that I'm encouraged to use pacing based on exercise testing, do some very, very, very mild exercises which will help reduce blood pooling, and increase physical activity as I am able.

    I'm also not convinced that early retirement and permanent disability are my hope for the future. I want to hear about people who are fully functioning even if they have to, say, take meds to stay that way. That sound like hope to me. So these peoples' stories don't give me loads of hope. Maybe I'm not hearing them the right way...?

    It feels to me like there are two different messages here -- the one I get when I go to Miami, and the one that came out in this meeting. Grow my own vegetables? Seriously? I can't even cook my own meals reliably. Is Dr K seeing many patients that are a lot less sick than I am? :confused:

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