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  1. Hip

    Are there any effective treatments?

    I don't know. We know in Whitney Dafoe and Olaf Bodden there was a significant worsening of ME/CFS, so that's one adverse outcome that can occur.
  2. Hip

    Are there any effective treatments?

    True, but that does not imply patients are not benefiting from these treatments. Formal evidence is not there because even when promising ME/CFS treatments are developed, nobody bothers to take it further and perform a large-scale clinical trial. For example, Martin Lerner's blinded...
  3. Hip

    Are there any effective treatments?

    Split thread Er,... Valcyte, Valtrex, Ampligen, oxymatrine, tenofovir, low-dose naltrexone, GcMAF, Pridgen protocol (for fibromyalgia).
  4. Hip

    Long term depression associated with 'neuroinflammation'

    What I've read is that most cases of PCS resolve within 6 months, but that some persist for more than a year. But I don't know very much about PCS. Interestingly, the review paper I quoted above said that there are two definitions of PCS in use, the DSM-IV definition, and the WHO ICD-10...
  5. Hip

    Long term depression associated with 'neuroinflammation'

    One interesting angle on the link between chronic neuroinflammation and ME/CFS is post-concussion syndrome (PCS). People may suffer PCS after a physical blow to the head, and PCS is known to involve neuroinflammation (microglial activation) and to exhibit ME/CFS-like symptoms. Interestingly...
  6. Hip

    Long term depression associated with 'neuroinflammation'

    I'd like to see more brain autopsy studies on those with long term psychiatric symptoms, specifically looking for chronic infections in the brain. If there is brain inflammation (immune activation), there must be a cause of this inflammation. Now it has been shown that infection/inflammation in...
  7. Hip

    Cochrane review and the PACE trial

    My brain is the organ that complains the most about the workload (isn't it ironic that when you are too ill to work in a salaried job, you actually find you work longer hours due to involvement with ME/CFS research and politics than you ever did in regular employment). I only briefly glanced at...
  8. Hip

    Cochrane review and the PACE trial

    This succinct article "Time to Reject the PACE Study" criticizes both PACE and the Cochrane review of PACE as well: The Cochrane review conflicts of interest in particular relate to the role of Dr Lillebeth Larun, which Prof James Coyne details in these blog articles.
  9. Hip

    Empty Sella Syndrome

    Primary empty sella syndrome is found in up to 35% of the population, according to this paper, although intriguingly is 5 times more common in females.
  10. Hip

    Low oxygen SPO2 anyone?

    What if you deliberately start taking rapid deep breaths: does that increase the oxygen saturation? I had a pulse oximeter (but it broke), and I noticed that sometimes my oxygen saturation would go down to around 95% (never quite as low as the 91% - 92% you are getting), but deliberate rapid...
  11. Hip

    Low oxygen SPO2 anyone?

    Could these lower oxygen saturation figures just be a result of ME/CFS patients (of necessity) being sedentary much of the time? If you are doing minimal physical exertion, presumably your oxygen requirements are going to decrease, and so I would guess breathing rate or the depth of your breathe...
  12. Hip

    How do we partner with Pharma?

    The new hepatitis C antiviral drugs like sofosbuvir which fully eradicate the virus and cure this disease indicate that pharmaceutical companies will provide cures. Yes, these new drugs cost $1000 per pill, so that a full course of treatment totals up to around $80,000, but that is necessary in...
  13. Hip

    How do we partner with Pharma?

    Unfortunately I did not see the job advert myself, but read an article in which the author claimed that some pharma company or companies were advertising for enterovirus experts, and the author concluded this was a sign they were going to develop an antiviral. You might start with writing to...
  14. Hip

    How do we partner with Pharma?

    John Chia has already got pharmaceutical companies on board, by explaining to them the need for good enterovirus antivirals. In the past, pharmaceutical companies have not wanted to invest in developing enterovirus antivirals, because they were only aware of one enterovirus infection that...
  15. Hip

    Can you recommend a good online polling site?

    Google Forms allows you to set up a really nice-looking free questionnaire that has a large range of question presentation options (multiple choice options, checkboxes, drop down menus, slider scales from 1 to 5, text boxes for long written answers, etc). So you can set up questionnaires with...
  16. Hip

    'Unrest' Film on PBS Soon

    It unfortunately does not seem to be scheduled on the UK version of PBS America, at least not in the next 10 days.
  17. Hip

    High CMV IgG titers. What to do?

    Just for reference purposes, here is Dr Chia's slide of enterovirus antibody titers in 200 ME/CFS patients versus 150 healthy controls: Enterovirus antibody titers of ME/CFS patients versus healthy controls Source: Dr John Chia, Invest in ME London Conference 2009 The healthy controls were...
  18. Hip

    High CMV IgG titers. What to do?

    Yes, Lerner's theory does certainly lack empirical evidence, but the same cannot be said for enterovirus non-cytolytic infections, which can be thought of as a sort of abortive infection. Without non-cytolytic infection, you cannot really explain what is going on in chronic coxsackievirus B...
  19. Hip

    High CMV IgG titers. What to do?

    This has been the perennial debate in ME/CFS: what is the meaning of the high antibody titers usually found in ME/CFS? Some believe that the high antibody titers found in ME/CFS patients are just the result of a dysfunctional immune system, and not the result of any ongoing infection...
  20. Hip

    Pain poll

    Good idea to do a poll like this, but it is hard from this poll to get any sense of the degree of suffering involved. For example, I normally do not have any pain, except very occasionally some transient lymph node pain in the chest. However, this for me is non consequential, so for all intents...
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