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!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Homeopathy

Discussion in 'Alternative Therapies' started by filfla4, Oct 7, 2010.

  1. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    What a raw deal for patients. They aren't even paying for the drugs.

    Has anyone recovered on this stuff?

    Probably after a year or so the body has mutated it out of existence.

    I think it's a pointless treatment.
  2. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    9
    Ohio
    Fejal, dude are you for real? Whats pointless, are your comments
  3. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    Your ad hominem attack just violated Phoenix rules.
  4. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    Fejal what is it that you recommend we do treatment wise?
  5. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Fejal's logic:

    1) He has bartonella, XMRV, and CFS
    2) He is doing a protocol similar to the Marshal Protocol, which would treat Bartonella (in addition to many other bacterial infections, if it works).
    3) He is feeling 25% better, so treating Bartonella will lead to recovery.
    4) Because Bartonella treatment will lead to recovery, XMRV is just another viral trigger and can't be the cause.

    Failed to consider:
    1) Many CFS patients have bartonella and other lyme co-infections
    2) Many of these CFS patients have treated these co-infections
    3) Many of these CFS patients have improved on these treatments
    4) Many of these CFS patients are still far from recovered.
    5) An acute retrovirus deems permanent recovery from treating co-infections logically suspect. If you treat an infection and you're cured, it's no longer a co-infection by definition.
  6. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    Thanks mojoey.
  7. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    9
    Ohio
    You forgot one other thing Joey....

    Failed to consider:

    He uses quackwatch as a reference....The site ran by a psychiatric lobbyist and is a total quack himself.
  8. Wayne

    Wayne Senior Member

    Messages:
    2,188
    Likes:
    1,261
    Ashland, Oregon
    Good one Michael, thanks! :Retro smile:
  9. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    9
    Ohio
    Thanks Wayne, not gonna respond to Fejal anymore. For goodness sakes, I said I ran into two people that were bedridden and have recovered to 80% on ampligen and he comes back and says:

    "Has anyone recovered on this stuff?

    Probably after a year or so the body has mutated it out of existence.

    I think it's a pointless treatment." --Fejal
  10. dannybex

    dannybex Senior Member

    Messages:
    2,167
    Likes:
    514
    Seattle
    It should also be noted that the quackwatch guy has been sued multiple times, and has lost EVERY case.
  11. justy

    justy Senior Member

    Messages:
    2,457
    Likes:
    2,286
    U.K
    I cant believe i did it again, just wrote a long post and hit the wrong button, sending it into oblivion. Cant possibly do it all again now. Just wanted to share my experiences of Homeopathy. will try again later.
  12. Wayne

    Wayne Senior Member

    Messages:
    2,188
    Likes:
    1,261
    Ashland, Oregon
    Safeguarding Our Posts

    Aw Justy, I'm really disappointed not to get to read your post. I've lost long posts myself, and have come up with the following solutions:

    If I figure it's going to be a fairly long post, I will write it up in my word processing programming, give it a file name, and save it every couple minutes or so. When I feel I'm ready to move it over to the "Reply Box", I will do a "Ctrl A" (Highlight All) followed by a "Ctrl C" (Copy All). When I get to the message board, I do a "Ctrl V" (Paste) to insert it.

    If I feel I'm going to do a shorter post, I will start it in the Reply Box, and see how long it gets. If I've started to "invest" more time into it than I thought, I will do a quick, "Ctrl A" followed by a "Ctrl C". This then saves what I've typed into a temporary storage. If I happen to lose it on screen, I just type "Ctrl V" which will paste it back into my box. I will sometimes do this several times to avoid losing my posts. It's such a sinking feeling when that happens.

    I hope you can hold onto some of those thoughts you were expressing. Usually when somebody does a long post, they're "on a roll". That doesn't come along often enough for me, and I suspect for PWCs in general. Thanks for giving it your best shot. Hope to hear back from you when you can.

    Best Regards, Wayne
  13. Wayne

    Wayne Senior Member

    Messages:
    2,188
    Likes:
    1,261
    Ashland, Oregon
    My Osteopathic Physicians Homeopathic Experience

    Hi All,

    I have an interesting health care practitioner I go to, an Osteopathic physician who now specializes in and only does cranial/sacral therapy. We often visit during our sessions, and hes shared some interesting tidbits on how his thinking has evolved on ME/CFS.

    He worked in the emergency room at a hospital for many years (which makes me think he might be an MD as well). He admitted that during most of this time, he bought into the prevailing thinking that ME/CFS was either depression and/or some sort of mental illness. When somebody would come into the emergency room saying they had CFS, he and his colleagues would sort of roll their eyes.

    After a while however, he began to see people come in who he had known for many years. He realized most of them were people he regarded as being as psychological and emotionally stable as anyone he could imagine. These observations made him realize his beliefs about CFS didnt add up. Over the ensuing years, he eventually came to believe CFS was likely caused by some sort of virus that was unable to be resolved by the immune system.

    I got the sense these were mostly fairly casual observations, but a day arrived in his life when he became very sick, and remained sick. As the days and weeks went by, he visited just about every health care practitioner he could think of that might help, and had just about every diagnostic test done that was suggested. Guess what? Nothing was showing up. And he began to wonder if he now had this debilitating disease known as CFS.

    Finally, after several months, in desperation, he visited a local classical homeopathic physician (who I seem to remember is an MD also). Within 24 hours of taking his first remedy, he was remarkably improved, and I believe he felt he was totally recovered by the second day. Hes as healthy as can be these days.

    I think this is an interesting story, so thought I would share it here. But the main reason Im posting this story is because of its ramifications. Ive come to believe that if somebody is in an initial stage of ME/CFS, and is able to visit a talented homeopathic physician, that this probably gives them about the best opportunity they may have to resolve it before it has a chance to become chronic and much more difficult to treat.

    I generally hesitate to give health recommendations to anybody, but instead try to focus on giving good information that may be helpful. But this is one area where I may make an exception to my rule. If/when somebody new to ME/CFS begins to post on this board, I may just steer them to this story, and gently suggest they give it high priority consideration.

    Best to All, Wayne
  14. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,261
    Likes:
    1,658
    Australia
    The danger of belief in efficacy of homeopathy is that it makes others more likely to suspect that CFS is psychosomatic. At least if homeopathy actually has an effect on the disease.

    The reality is that most of these stories are either coincidence, or homeopathy only works for those with somatisation type disorders. You guys clearly don't fit into either of these categories - the fact is that homeopathy isn't curative for CFS, or you guys wouldn't be here having this discussion.

    In the case of animal testing for example, observer bias still muddies up the result, hence the emphasis on DOUBLE blind testing for any comparisons to be indicative of the actual treatment effect. This is absolutely necessary if there is going to be any sort of subjective interpretation including analysis of tomography and even measuring tumor weight, a technique that is known to be unreliable due to difficulties in isolating exactly all tumor tissue.
    It is all about having an equal basis for comparison. Even minor methodological differences can result in significant differences in results.

    With regards to (true) anecdotal stories, I'd like to tell one too.

    There was a 15 year old youth, who I will refer to as AJ. AJ developed a post-viral type fatigue syndrome straight after a Sabin/DPT immunisation. Due to rapid onset of severe muscle weakness straight after an immunisation, doctors were initially concerned that it was Guillain-Barre syndrome. After nerve conduction tests (2 months later) ruled that out, a PVT type diagnosis was suggested. At that time, AJ was rather impressionable (he prided himself on being 'open minded' and his mother suggested homeopathic treatment. Within 3-4 weeks, AJ was mostly better. CFS was not diagnosed as AJ was only ill for 3 months or so. But that was only the start. AJ later relapsed and decided to try homeopathy again, since it seemed to work so well the first time around. Only after several years of treatment with no overall change, AJ realised that homeopathy was not having an effect on his disease. The placebo effect wore off. In hindsight, the initial treatment success was likely to be a coincidence.
  15. leela

    leela Slow But Hopeful

    Messages:
    2,374
    Likes:
    2,743
    Couchland, USA
    This is your opinion, to which you are wholly entitled, but your opinion does not necessarily correspond with reality.
  16. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    9
    Ohio
    Wayne, thanks for sharing that story...Along those lines, In Dr Lerners presentation in DC, he had shared data over many years of treating CFS patients.

    On his protocol the recovery rate was something like 76% for those who had been sick under 5 years but was extremely low for those who were sick more than 5 years.

    He found that recovery usually started 6 months after treatment but he also mentioned many of the patients were not 100% or did not function at pre-illness levels again.

    @ANDREW1--- I just have to say the reality is I dont know anyone who is cured from this disease and Im beginning to think its not possible unless treated at a very early stage.

    HOWEVER, substantial recovery or improvement is possible at any stage...And again I think it does no justice to others too belittle the methods in which they have found improvements.

    Thanks
  17. Esther12

    Esther12 Senior Member

    Messages:
    5,174
    Likes:
    5,156
    That's a danger I could more than live with if it was actually effective!

    I also think that homeopathy could help simply by giving patients that chance to believe that they're being cared for by a competent professional. For many CFS patients who have been so let down by the medical community I can see that having a real benefit. Stress reduction will help with somatization, but also seems to help with other physical illnesses.

    Just practically, for anyone who spends a lot of time thinking about their health problems and feeling responsible for them then being able to have someone else take responsbility will free up time and energy that could leave you feeling better - maybe this could even lead to a virtuous cycle of improvement and recovery?

    I'm quite open to the possibility that homeopathy could help some people with CFS, but it seems very unlikely that this benefit would occur because of the properties of the particular homeopathic remedies taken.
  18. Wayne

    Wayne Senior Member

    Messages:
    2,188
    Likes:
    1,261
    Ashland, Oregon
    Somatoform Disorder Affecting Homeopathic Results ?

    Hey Andrew,

    Welcome to the discussion. Before I respond to some of your points, I would like to thank you for doing a great job on the CFSAC conference call. I very much appreciate the presentation you and others made on our behalf. For anybody interested in listening to Andrew's testimony, click on the following link:

    Chronic Fatigue Syndrome Advisory Committee
    US Department of Health and Human Services
    Agenda – CFSAC Fall 2010 Meeting


    If you scroll down on the agenda listed below the video, Andrew is Public Comment - Speaker 3. Clicking on that will take you directly to Andrew at the 4:11 mark.

    .....................................

    I'm surprised you used the above example to make your points. I'm not sure if others agree, but I feel one of the hallmarks of ME/CFS is: various kinds of therapies (natural and conventional) often help improve symptoms for a while, but eventually the beneficial effects wear off, and we're usually no better off than before.

    This has happened to me on numerous occasions, and I’ve always found this to be confusing and frustrating. I read an argument once that this very phenomena was one of the strongest cases to be made for CFS being psychosomatic. You might not be surprised to hear that I strenuously disagree.

    If this had happened to me with EVERY therapy I tried, that might be a different story. But I only got significant results from perhaps 10% of the things I've tried. Of that 10% , I would guess that only 1/10 of them gave me what I would call lasting benefits. That's a mere 1% of all the modalities tried.

    I’ve long viewed myself to be relentless, resilient and resourceful. I’ve researched and experimented with so many different things over several decades, and feel the temporary or permanent results I’ve achieved were the results of my own persistence and observation of what worked and what didn’t, and not because of coincidence or placebo affect.

    I don’t believe the jist of this discussion is whether homeopathy is curative for ME/CFS, although I do believe if administered early on, there’s a good chance it could be. It seems to me we’re discussing whether homeopathy might be effective in addressing some of the “layers” of dysfunction/dysregulation involved in ME/CFS. In this regard, I believe the approach and practice of homeopathy is far different from that of modern conventional medicine. As such, I believe they need to be evaluated differently.

    For instance, different people with the exact same symptoms of ME/CFS (or any other disorder), will likely be given different remedies. Depending on the discretion and expertise of the practitioner, a specific remedy may be strengthened or weakened over time. At a certain point, this remedy may be substituted for another one, based on the progression of results (or lack thereof). When I view these differences, it makes me think that double-blind testing (which has its own limitations) of homeopathic remedies is not the best way to evaluate its effectiveness.

    .......................

    I read a story once about a U.S. government health care official who had the opportunity to talk with the head of a major medical facility in Europe specializing in various types of oxygenation therapies. This official was intrigued enough to suggest that perhaps they “subject” their work to the “rigors” of double-blinded studies.

    The head of the medical facility said he would not consider it. Why? Because his facility (and other similar ones) had already successfully treated millions of patients over many decades. He said he would consider it barbaric to withhold known successful treatment from somebody who may desperately need it. He would instead depend on their reams of accumulated results and continue to use the low-cost treatments he found so effective.

    It’s a different way of looking at things. I guess to each their own.

    Best Regards, Wayne
    ...................................

    Addendum

    When I finally applied for SSDI back in 1997 (after 15 years of CFS), I was required to meet with a psychologist for evaluation (the one I visited was considered a “tough nut”). When he questioned me about what I was trying to do for myself, I gave him a short abbreviated list (about 20 or so at the time), which for some reason he found very interesting. He asked me if he could keep the list, which I assume he forwarded on to SS.

    He eventually sent a supportive letter to Social Security in which he said I either had an obsessive/compulsive disorder, or actually had a real physical illness known as CFS. Either way, he considered my situation credible and recommended my application be accepted. So after all my CFS years, I was finally able to receive SSDI. Interestingly, when I saw why my application was approved, it stated “somatoform disorder”.

    I was pretty unhappy about that, and briefly considered making a fuss about it. But then I realized it wouldn’t make much sense to make a stink about a complex process which ended with me getting benefits. Leave well enough alone, right? :Retro smile:

    I have to say however, I still feel a bit rankled when anyone suggests, however gently, that I, or other PWCs are sick (or getting better) because of somatization. I know by conventional medical thinking, most of us would likely fit in that category, but it's clear to me I should utterly reject this sort of perspective.
  19. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    None of the patients have used BALI so your first major criticism doesn't hold.
    The second one is suspect because XMRV is still mutated by the body's immune system and is eventually knocked out, and as you said, it is just one of three known viral triggers.

    If you don't address vitamin D regulation with Bartonella you will not recover. See:
    http://www.forums.aboutmecfs.org/showthread.php?p=130984&page=2#post130984

    I don't see any reason to believe anti-retroviral therapy will work against CFS.

    Regarding Quackwatch, you have to understand the strengths of the site. It is valid and excellent at highlighting scientific flaws. However they tend towards concensus and aren't innovative (overly conservative). Dr. Barrett has not lost every case and the ones he did lose were just on technicalities. For more information on his legal battles with quacks visit the site.
  20. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,261
    Likes:
    1,658
    Australia
    Esther12 - I agree.

    I'd like to thank Andrew too. I assume this was the member with the username "Andrew".

    When I signed up, I was under the (mistaken) assumption that the person with that username would not be active. But I have been considering changing my username.

    Why is it surprising? This is common in terms of mistaken attributions. There might have been a change originally (as per my story), but unless it occurs consistently when the treatment is tried again, it is likely to be a coincidence. The same goes for anecdotal stories about all medicines..

    How early is early? Within 2 months?

    Lack of rigour might reduce effectiveness, but if the differences are profound, specific combinations would show up in the results.
    But I do agree that the heterogeneity of this disease (group) obscures treatment results in general.

    There were lots of "known effective" treatments in the past. It wasn't until the rigour of proper testing was applied that many of these claims were demonstrated to be incorrect.

    In a philosophical sense, somatization is a diagnosis based on illness. Until the pathways for such physical symptoms to develop are elucidated, then the existence of such a disease is ironically imagined by medical practitioners.

    Anyone who is honest with regards to conventional medicine will understand its substantial technological limitations. Medicine is an art not a science, at least according to the GPs I have spoken to. It is only by repeatedly subjecting it to scientific questioning, that we can hope to improve on our understanding. http://xkcd.com/242/ http://xkcd.com/765/

See more popular forum discussions.

Share This Page