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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

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    Curable app

    Sorry, I've fixed that now.
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    Curable app

    Yes, this is absolutely true, and it's essentially how I managed to fully recover 20 years ago without using any treatments other than what I figured out by myself. But I can't discuss it here (or on most other forums) because it makes too many people angry and upset. But it really...
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    any theories on why nothing seems to cause a nocticeable shift in well-being??

    Yes, I would agree. It's important to identify the initial cause of your illness. For most people that is some kind of stressor (work stress, relationship/emotional stressor), sometimes physical stress (excessive exercise / overtraining), and sometimes a viral infection, and quite often some...
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    Full recovery- is it possible???

    I think it is. Note that neither Matt nor I used a "psychological treatment" like CBT.
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    Full recovery- is it possible???

    See my previous posts. I don't take any drugs or supplements (and didn't use any to recover). I come here occasionally to help others, although I don't seem to be very welcome so I only post occasionally. Most people who recover don't hang out on these forums.
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    Full recovery- is it possible???

    I think it's important to figure out the true causes of your CFS, otherwise it can definitely happen again.
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    Full recovery- is it possible???

    Oh, they definitely do. I would recommend talking to people who have recovered, rather than simply assuming we didn't have the same illness.
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    Full recovery- is it possible???

    I don't think so. I have talked to many female patients who have fully recovered as well.
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    Full recovery- is it possible???

    Myself as well...fully recovered to 100% health for almost 20 years now, with no relapses during that time. Discussed in another thread.
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I completely agree with that.The symptoms also don't list fatigue or PEM (only weakness, and it says that is less common). I suspect Chiari is quite rare among "CFS" patients, but if the symptoms fit and there are obvious abnormalities then it is certainly worth investigating.
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    His wording was "These are the only neurosurgeons who consistently know how to read these images to diagnose CCI." (3 in the world) I got the impression from the posts above that the symptoms weren't related to head/neck position.
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    But do we actually have that evidence? If only 3 or 4 specialists in the USA are diagnosing this, that should raise some red flags. As for it causing CFS-like symptoms: if there was a structural defect impinging on the sympathetic and/or parasympathetic nerves, you would expect it cause...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    The parallel isn't between the two surgeries, but in the fact that both are being pushed to patients with little to no evidence of effectiveness, and both had a lot of anecdotal reports and uncontrolled trials. In LT we only discovered it had no effect after controlled trials were done. For this...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    And to clarify again, this surgery is a lot more risky than liberation therapy.
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Just to clarify: of course liberation therapy is completely different from Chiari treatment. I was providing it as an example of another type of surgery that had a huge amount of anecdotal positive reports, positive uncontrolled trials, somewhat risky procedure, somewhat dubious science, which...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    If people want to go ahead with the surgery, that's fine, I'm just suggesting that people understand the risks. Overall, it seems to be very similar to Liberation Therapy for MS as discussed above, but more risky. LT had lots of anecdotal glowing reviews of people getting their health back (and...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    But as I pointed out, one of them has had 20 malpractice lawsuits.
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    The Complex Chiari malformation, though well described in the literature (see section on craniocervical instability), is not universally recognized among those who perform Chiari surgery. Prospective studies in EDS patients with Complex Chiari malformation are needed to compare outcomes...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I'd suggest googling it, as it will help explain why I believe chiari treatments are problematic.
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    The problem with this is that there isn't really much (if any) research, and it has a lot more potential for complications than liberation therapy.
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Yes, as long as you understand the problems with anecdotal reports. For anyone who doesn't see the problems, I'd strongly recommend investigating the Liberation Therapy debacle.
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Not sure if you were referring to my post, but let me clarify that I definitely was NOT questioning his integrity or the fact that he has recovered.
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I would be very careful with this. There are a number of surgeons doing this, such as Dr Bolognese: http://www.nydailynews.com/new-york/long-island-brain-surgeon-slapped-malpractice-suits-article-1.2850568 This is very dangerous surgery, and a lot of things can go wrong. There also doesn't...
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    What makes CFS different from somatoform disorder

    Which particular one? This is all very well established stuff, so I didn't think it was necessary to post references, but I'm happy to post some if you're genuinely interested and not aware of this science.
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    What makes CFS different from somatoform disorder

    It was VO2max I was referring to, which didn't replicate earlier studies. Although you're right that peak workload did reduce in all 3 trials on day 2 (although only by 13%, which I don't think is sufficient to explain PEM). I used to think the repeat CPET might be a good biomarker, but now I'm...
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    What makes CFS different from somatoform disorder

    I suspect you won't accept any evidence. However it is very well established that stress causes bowel movements and diarrhea. This is very easy to demonstrate in the lab. You can probably even test it on yourself. Anyway, there's not really any doubt about this. By definition, IBS-D is an...
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    What makes CFS different from somatoform disorder

    It is very well established that psychological stress causes significant alterations to the immune system, and that pain has a psychological aspect.
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    What makes CFS different from somatoform disorder

    While I agree that doctors shouldn't automatically jump to the psychosomatic conclusion, I think they also shouldn't completely ignore it. Neither is good for patients, and from what I can tell (in the UK at least), most doctors have the balance about right. In the USA they tend to be more on...
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    What makes CFS different from somatoform disorder

    There isn't really any difference, other than presumed etiology. Somatoform (or psychosomatic) doesn't actually mean there are no physical abnormalities...that would be hypochondria. There are many well established physical abnormalities/symptoms that we know can be caused by psychological...
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    What is your personal theory or understanding of ME/CFS?

    It's this one: https://www.ncbi.nlm.nih.gov/pubmed/9509246 Full-text is on sci-hub. It's pretty old, but then again I think most of those enterovirus studies are from the 90s.