1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

Highest Rated Treatments on HealClick

Discussion in 'General Treatment' started by mojoey, Feb 15, 2014.

  1. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
  2. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,199
    Likes:
    1,385
    Left Coast
    I saw this awhile ago and for me, who's been sick for over 19 yrs and mostly housebound, most of it pretty much crap. The only thing that has ever helped me over 19 yrs is Acylcovir and maybe LDN (I just started it).
    taniaaust1 and TigerLilea like this.
  3. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    I just published this list for the first time today. This list is specific to ME/CFS, and not the "overall" list published last week. This list is generated entirely from our database of ~900 ME/CFS patients, not commentary from me. LDN has a 3.3 / 5 rating with 27 reviews, and Acyclovir has a high rating of 4.3 but the sample size is only 3. As you can see, valtrex and valcyte are both high up on this list, so not sure this list disagrees with your experience there?
    Last edited: Feb 15, 2014
    Crux likes this.
  4. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,199
    Likes:
    1,385
    Left Coast
    I have ME/CFS and I'm just saying that for me, most if not all of the items on the list either had no effect, caused a horrible side effect, stopped working, caused massive weight gain or addiction.
    Kati, merylg and mojoey like this.
  5. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    917
    Likes:
    508
    Murcia, Spain
    I like this project of HealClick! I signed in to see stuff.
  6. Xhale19991

    Xhale19991

    Messages:
    77
    Likes:
    45
    Awesome stuff Joey. Will make a donation ASAP.
  7. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,574
    Likes:
    1,208
    Florida
    Interesting list. Thanks.

    I'm using or have successfully used 8 of these treatments but I'm still nonfunctioning.

    I'm not sure describing these as treatments is going to help pwcs.
    For the most part, I see these as symptom management. If that's the objective, I'd add being supine as often as possible to the list.

    I'm not up on several of the meds listed. Are they considered "cures" for some ?

    tx .. x
    SOC and Kati like this.
  8. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Patients rate on a 1-5 scale (from much worse to much better). Our goal was not just to review treatments but to see how treatment ratings correlate to changes in patients' conditions. I think it'd be a good idea to add a way to indicate a treatment led to recovery, instead of just symptom management as you mentioned.
    justy, merylg, L'engle and 1 other person like this.
  9. L'engle

    L'engle moderate ME

    Messages:
    948
    Likes:
    417
    Canada
    It would be helpful if the graph had units of measure on the horizonal axis. I'm assuming the black lines are the numbers zero to four and the treatments listed are rated in the 3.5+ category. :)
  10. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Here is the actual infograph: http://bit.ly/1mjAh3j Hover over the bars to see the exact rating. You can also see sample sizes there by clicking "# Ratings"
    L'engle and justy like this.
  11. Iquitos

    Iquitos Senior Member

    Messages:
    346
    Likes:
    487
    Colorado
    Looks like the ME-is-caused-by-mold folks dominate the list.
    peggy-sue, Kati and Valentijn like this.
  12. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    This list is a survey of personal experiences, not theories (on causation or best treatments for the population)

    At this point we have slightly more reviews for valcyte than for avoidance, so we're not shutting anyone out or up.
  13. Xhale19991

    Xhale19991

    Messages:
    77
    Likes:
    45
    What exactly is mold avoidance? How is one supposed to know what buildings have mold versus those that don't?
    Nielk likes this.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,502
    Likes:
    5,271
    Albuquerque
    I'd think that all patient surveys are going to be influenced by the composition of the group--in this case Healclick members. It seems like, as every group will attract different patient populations, this would be hard to control for. I wish there were a way to get around this, but I don't see how it could be done.

    Sushi
    peggy-sue and Kati like this.
  15. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    The only way to get away from this problem is larger sample sizes. But based on these sample sizes so far, we are not skewed toward any one treatment, mold avoidance or otherwise. It's pretty well balanced if you look at the #'s closely.
  16. SOC

    SOC Moderator and Senior Member

    Messages:
    5,278
    Likes:
    6,202
    USA
    And then there's the fact that there is no way to know whether the people participating have the illness they claim. It doesn't take much for a group of people (with or without the illness) who have a vested interest in some treatment to load the "effective treatments" in that direction. As mojoey says, the more people who participate, the less a relatively small group can influence the results. Still, with so much misdiagnosis in ME/CFS, I'm not sure we can be overly confident in the rankings of treatments. The top ranked treatments might be the most effective for people who think they have CFS, but could easily apply more to people with chronic fatigue than ME/CFS.

    That said, as long as we all understand the limits of this kind of "data" collection, we might find ways to make this useful.
  17. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    I agree, and that goes for any forum. It goes for the crowdsourced document I put together on gcmaf, and the PR surveys on methylation protocol. It's all limited, and the only ways to get results that get closer to reality are better disease definitions and larger sample sizes.

    As long as we stay keen of the limitations (as you suggested), these results might be used as a launchpad to do more research and read the treatment reviews more closely. This is the aggregate data, but a lot of our users are leaving detailed reviews that give these numbers much needed context.
    Last edited: Feb 16, 2014
    Radio, xchocoholic, MTanaka and 2 others like this.
  18. Kati

    Kati Patient in training

    Messages:
    1,840
    Likes:
    921

    I agree that many of the 'treatments' listed above are symptom management and not treatment. Meditation, pacing, diets are no treatments and no cure. 99% of the patients using these modalities are still here. This should be a strong indicator that these are no treatments but mere ways of coping.

    i don't want to assume that we got a retrovirus, but HIV patients do not see their viral load reduced from diet, meditation and wishful thinking.

    We so need serious research.


    i am not sure that being 'matched' to other patients would help me to be honest. I am not one to like being given recommendations of herbs, supplements, diets, meditation and other self help stuff. I hate being told 'you know it could be Lyme'. What I know I need is medical care.
    Last edited: Feb 20, 2014
    NK17, Snowdrop, Iquitos and 4 others like this.
  19. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,921
    Likes:
    784
    Concord, NH
    I agree, effective medical care that gives me back substantial functionality, if not a cure!

    GG
    xchocoholic and catly like this.
  20. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Hi Kati,

    Thanks so much for the honest feedback. For the record, I don't look at any of these treatments as a cure, and suggesting that there was a cure on that list was never my intention for posting about it.

    And we are in agreement that the biggest need is serious research. Whether you find the sharing-with-each-other part beneficial (many of our users do but I understand it's not for everyone, especially if you believe strongly in one theory), everything our users share about their symptoms, well-being, treatments, maybe even labs (soon) may be anonymized and used for patient-reported outcomes studies.

    I am talking with researchers now to try to get a study off the ground.
    Last edited: Feb 20, 2014

See more popular forum discussions.

Share This Page