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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. A.B.

    Cytokine signature in chronic fatigue syndrome

    Where nervous psychobabblers cite a TGF-beta study that did not meet minimum standards of quality control to raise doubt about the validity of a study that threatens their precious psychosocial model.
  2. A.B.

    The doctor tells me that I do not have cfs

    Sounds as if 1. Duloxetine is causing additional symptoms. 2. Your doctor is incompetent, as seen by (a) believing a CFS diagnosis is tied to abnormalities in CD8+ T cells (b) prescribing the homeopathic remedy 2LEBV (your post is a bit hard to decipher so maybe I'm misunderstanding)
  3. A.B.

    Ponderings and speculations about purinergic signaling, in pursuit of a unified ME/CFS theory

    An immune suppression so strong the immune system does not noticably react would presumably lead to a swift death. I think what's happening is that patients are more resistant to colds and flus. The metabolic changes could create unfavorable conditions for infections to take hold.
  4. A.B.

    Ponderings and speculations about purinergic signaling, in pursuit of a unified ME/CFS theory

    Interesting idea. @Jonathan Edwards' model of B cell autoimmunity is conceptually similar I believe (immune signals that harm the body while simultaneously driving further immune response and thereby creating a vicious cycle of autoimmunity). A while ago I had a similar thought about an...
  5. A.B.

    Are current chronic fatigue syndrome criteria diagnosing different disease phenotypes?

    That's questionable. Let's look at the sample sizes of the different groups: Controls 10 Fukuda only 6 Fukuda + 2003 clinical 9 Fukuda + 2003 research 8 Fukuda + 2003 + 2011 26 I did not count the variables measured but they look like several dozens. All the between-group comparisons provide...
  6. A.B.

    Link to full article to BMJ's Best Practice for ME

    I like it but the treatment part is clearly still heavily influenced by BPS views: contradictory advice on exertion, a soft recommendation for GET, lots of emphasis on antidepressants.
  7. A.B.

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    We haven't really identified any subgroups. Different levels of some molecule or something like that isn't enough to really delineate subgroups. As example, being able to say for sure that in a portion of patients the problem is some inflammatory process in the gut would delineating a subgroup...
  8. A.B.

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Many of these previous studies were small, which makes it hard to discover subgroups. Bigger studies could discover subgroups. Identifying one subgroup would be a significant step forward.
  9. A.B.

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    A lot of research is like that. Knowing what is not particularly abnormal is still valuable, as long as the work is of good quality.
  10. A.B.

    Severe palpitations and tachycardia.

    Chest pain and heart symptoms can be due to acid reflux, especially if they worsen while lying down. In my case this appeared to be due to insufficient stomach acid, and improved with betaine hcl. The heart symptoms were tachycardia, single abnormal heart beats accompanied by a painful jolt...
  11. A.B.

    Seeking information on long-term outcomes with Dr. Kaufman

    With the RituxME trial results soon to be published, it's not a good moment to make big treatment decisions.
  12. A.B.

    UNREST screening and reception at the Speaker's House, House of Commons

    Do you think the Norwegian model of user-defined research will turn out to be flawed? In that model, research grants have to pass two rounds of review, first by patients (presumably representatives of major patient organizations), then by researchers.
  13. A.B.

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    This kind of abnormality seems to be common in fatiguing illnesses.
  14. A.B.

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    Patients having a good day, or a case of misdiagnosis?
  15. A.B.

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Do antivirals reduce proliferation? https://www.omf.ngo/2016/09/09/updated-metabolic-features-of-chronic-fatigue-syndrome-q-a-with-robert-naviaux-md/
  16. A.B.

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    p<0.001 on many results after Bonferroni correction for multiple comparisons. I don't think these results are due to false positives :D. Notable that they used a Seahorse. It seems that what was needed to find abnormalities was more the right tech and knowledge, rather than the right case...
  17. A.B.

    Jen Brea talking to GMT news

    The battery analogy is useful to help others make sense of patient's activity patterns. Unrest appears to be a spectacular success everywhere.
  18. A.B.

    T-cells and metabolomics

    My first reaction: probably not, because T cells are too few in comparison to the other cells in the body to have a large impact on metabolomics. However they seem to be reporting exactly that.
  19. A.B.

    Documentary: Undercover in German Lyme Clinics

    That alone doesn't mean you have lyme disease. Many medications have multiple effects in the body.
  20. A.B.

    Documentary: Undercover in German Lyme Clinics

    The calculation assumes that the illness is randomly distributed in the population, when in reality environmental and genetic risk factors are often important. There was a famous case where a mother was accused of having killed both of her children because based on incidence rates it was assumed...
  21. A.B.

    Documentary: Undercover in German Lyme Clinics

    Prevalence doesn't say anything how the illness is distributed in the population.
  22. A.B.

    Documentary: Undercover in German Lyme Clinics

    The signal/noise ratio by proponents of this idea is low. Signal would be convincing studies, good methodology, reproducibility, ethical behaviour. Noise would be hearsay, unreproducible studies, unreliable tests, bold claims unsupported by evidence and so on. If they were fundamentally correct...
  23. A.B.

    RME Conferences in Stockholm and Malmö, October 2017.

    What does physiologic dysfunction refer to?
  24. A.B.

    Documentary: Undercover in German Lyme Clinics

    What about the doctors that order tests from this clinic? After a while of doing that, they must realize that something is wrong when the tests are hardly ever negative. Unless they already believe that almost everyone with various chronic diseases has really a chronic lyme infection. They...
  25. A.B.

    Documentary: Undercover in German Lyme Clinics

    The whole chronic lyme thing is a scam, or a delusion. Apologies if feelings are hurt by this.
  26. A.B.

    Study showed no serious side effects of Lightning Process

    The ban on promoting LP as treatment for illness seems to be working. Hmm... I wonder what the relevant authorities would say. To me it seems that it's still being promoted as treatment, just not called a treatment.
  27. A.B.

    Prof Sir Regius Simon Wessely on Judicial Appointments Commission

    It's not true. Research has been moving in the direction of viewing it as systemic disease, affecting various parts of the body. The brain findings are inconsistent (like so many other findings) and there is no clear evidence, as far as I know, that the disease originates in the brain. Brain...
  28. A.B.

    Rituximab Trial - SMC Expert Opinion?

    They can argue that CBT/GET are more cost effective and should remain treatment of choice for most patients. That's the pessimistic prediction. A more optimistic one is that they will come under increasing pressure and scrutiny and finally be held accountable in some way. A positive result will...
  29. A.B.

    Rituximab Trial - SMC Expert Opinion?

    I think a number of us were shocked at some point and said some dumb things.
  30. A.B.

    What some doctors really think of us

    One doctor wrote: This poor guy is in for a shock when he finds out that psychotherapy and exercise do nothing beyond a small placebo effect.