Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Traditional Chinese Medicine Works

Discussion in 'Alternative Therapies' started by joseyw, Feb 8, 2017.

  1. joseyw

    joseyw

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    I have been visiting a TCM doctor for the past six months and I have made a remarkable recovery. The combination of acupuncture and herbal tea (along with some dietary modifications) has helped me so much both me and the TCM doctor reckon I will be fully cured in around two to three months. I can now breathe freely for the first time in three and a half years as my lungs have now opened fully. It has been a rocky road due to the various 'healing crisis' I have endured but as the old saying goes 'things get worse before they get better'.

    Go and see a reputable TCM doctor. I think you will be amazed at what diagnosis you are given. The TCM doctor will tell you what is wrong with you and will know how to treat it. Unfortunately western doctors don't fully understand it and will more than likely tell you it will go away on it's own or you may have it for life. Don't believe this!
     
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  2. Hip

    Hip Senior Member

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    Hi @joseyw
    Can I ask, on the ME/CFS severity scale of mild, moderate and severe, where were you on this scale before you had the acupuncture/herb treatment, and where are you now on that scale as a result of treatment?
     
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  3. slysaint

    slysaint Senior Member

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    There is a post like this for TCM on almost every illness forum. ...........with similar 'herbal teas', potions and lotions......
    the acupuncture might be of some benefit to some but the rest........hmmm:cautious:
     
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  4. Old Bones

    Old Bones Senior Member

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    I saw a TCM practitioner for a year and a half (from once to three times per week) during my first few years with ME. Like @joseyw , I had acupuncture treatments, drank vile tasting herbal infusions and ginseng tea, changed my diet, did positive affirmations and meditation, etc. Things did get worse, especially after the practitioner became frustrated at my failure to improve. He intentionally gave me a third-degree burn on my leg during a moxybustion treatment, and my leg swelled up after becoming infected. Apparently this drastic treatment had worked for him. While I was still in shock after this unapproved and unexpected assault, he actually showed me a scar on his leg in the exact location he burned me. It took years for my scar to fade. I never returned.
     
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  5. Lissyleigh

    Lissyleigh

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    Are you a practitioner? Seems very suspicious to me that you have joined more than one m.e forum today to write the very same post which is basically to promote TCM.

    In any case, what if anything works is a very individual thing. literally one mans food is another mans poison.
     
  6. joseyw

    joseyw

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    Hi Hip[,

    I don't know where I am on the ME/CFS severity scale as the doctor's never classified it. I was able to go to work but with extreme effort and at some points I did literally lose the will to live. Much of this was due to the chronic indigestion that accompanied my other symptoms. I wouldn't have ever classified myself as severe as I know of people who cannot get out of bed, and if they do they are exhausted afterwards. Nonetheless I suffered from depression and completely lost all sense of my own identity whIch I feel is worse for me than the fatigue and all of the other symptoms. At this point I would now say I have extremely mild ME/CFS and have noticed vast improvements in all of my symptoms, I am confident that by around Spring time I will be back to full fitness. It has been a tough road but I think it is well worth it so I can get my life back.

    I posted this out of the goodness of my heart (which is why I took time out of my own life and posted several of these) in order that I may pass on what has worked and to shine some light to those people suffering. I am not a TCM doctor. I am just an ordinary person who has done their research and I feel I now deserve to be well again.

    The cynicism of some people never ceases to amaze me.

    If I had been given this type of information all of those years ago I would have researched it and if satisfied with my findings acted upon it. Thankfully I am open minded and for that reason I am confident I will soon be cured. If you are not open minded and are not willing to try alternative treatments and are waiting for western medicine to come up with a miracle cure unfortunately you may be waiting a long while. I don't just mean TCM doctors, get on-line and see what else is working for people because obviously traditional medicine doesn't have the answers. I wish it did - it would have saved me lots of money.

    I'm sorry to hear about Old Bones experience. It sounds like your TCM doctor let you down badly. That's why I would always recommend a TCM doctor with a good reputation. Also, if your ME/CFS is severe it could take longer than a year to be cured or reach a level where you are happy.

    Lissyleigh is right in what she says that what works for one person will not always work for another and it may be that TCM medicine will not work for you and that someone else is better suited to you but bear in mind we are not all entirely different. If we were there would be millions of different schools of medicine. We are unique but also many of us are similar.

    Many people get put off when the healing crisis kicks (this happens with all types of alternative therapy even deep tissue massage) because they feel worse and don't see any improvements. The secret is to break through this barrier and to realise the healing crisis is a sign you are actually getting better.

    Your body heals itself through TCM. TCM is just the mechanism to kickstart it and to keep pointing it in the right direction. After all what do you think heals broken bones, cuts etc. - your own body.

    If you do decide to proceed with an alternative therapy/remedy tread carefully and always go into it with your eyes fully open. Sadly, if you remain closed minded like many of the cynics out there you may never reach the level of health and well being you seek.

    I no longer feel the need to explain my post any further and hope that some people find this discussion life changing.
     
  7. Hip

    Hip Senior Member

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    We are supposed to be welcoming to new members of the forum; as opposed to immediately casting aspersions on them. This is clearly not a spam post, so I can't see any basis for your suspicions.



    That sounds like you initially had mild ME/CFS, perhaps at the bottom end of mild, edging onto moderate ME/CFS category. Generally speaking, if you are able to work, then it's mild ME/CFS.



    That seems like you have made a good improvement.



    Yes, I know about the depression, for me it is one of the worst comorbid symptoms of my ME/CFS.

    Can I ask, when you started acupuncture, how many times a month did you get the acupuncture treatment, and how long did it take for the improvements in your depression symptoms to begin to manifest? I am trying to find some better treatments for my depression symptoms.
     
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  8. Kina

    Kina

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    The body can heal broken bones, cuts etc without Traditional Chinse Medicine -- in fact without any kind of medicine at all. Well you might end up with a bone that hasn't set right or a cut that has gone septic. I would prefer a 'conventional doctor' to set my bones or provide me with the right AB's to fend off flesh eating necrosis.

    I alway find it insulting to be called a closed mind cynic just because I don't embrace TCM or some other unproven alternative medicine and it's worse when I am told I will never attain a good level of health if I don't. Sounds like the CBTers saying -- 'Change your illness beliefs or you will remain sick'. Seriously, I have researched the shit out of many alternative therapies and they are no better than placebo. And actually to research the effectiveness of something and to then try it is actually open-minded.

    I didn't find your post 'life changing', I found the content rather insulting.
     
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  9. Hip

    Hip Senior Member

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    I don't think anyone called anybody a closed mind cynic just because they don't embrace TCM. Nor have they suggested that you will never attain a good level of health if you don't.

    I think the cynicism relates to the way some viewed @joseyw's post as "very suspicious" and "basically to promote TCM", which I don't think is the case at all.

    If someone has benefited from a treatment, and takes the time to join a forum and pass those details on with the view to helping others, you have to recognize that the person is posting it with good intentions. So to meet those good intentions with cynicism is a bit harsh and unwelcoming.

    And clearly joseyw is not specifically promoting TCM; she says:
    Given what little help doctors are currently able to offer ME/CFS patients, that's not an unreasonable statement. It's certainly not an insulting one.

    Of course, many of us on this forum have experimented with far more treatments, both conventional and alternative, than joseyw could even imagine; so in fact she is preaching to the converted; nevertheless, it seems to be done with good intentions, so I can't see how anyone would feel insulted or cynical.
     
    Last edited: Feb 13, 2017
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  10. Kina

    Kina

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    @Hip

    She said:

    That is insulting. End of. And seriously only @joseyw can answer to their meaning, not you.

    You don't get and you never will judging by your response. You don't get to tell me to not be insulted, I am.
     
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  11. Hip

    Hip Senior Member

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    Well the above paragraph you quoted summarizes my some of my philosophy on health issues; so I personally don't find it insulting; far from it; that philosophy chimes with the approach I generally take to health.

    Long before I developed ME/CFS, I had an interest in health remedies, and would often suggest to others what remedies might help with any particular ailments they may have. I used to like researching this. I always noticed that people tend to fall in one of two camps: they would either be quite interested with the suggestion, and would perhaps search for more info on it. Or they would give me cynical comment or look, and immediately discount any potential benefit that the remedy could provide. I think this latter camp is what joseyw is referring to.


    Not that my opened minded philosophy has been successful for me though: I still have ME/CFS!
     
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  12. Lissyleigh

    Lissyleigh

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    Please bear with me as I'm on my phone due to a malfunctioning laptop and can't write so well on my phone.

    Please accept my sincere apologies Josey and to anyone else who was offended by my post, it was not meant. I actually feel quite horrified at myself for being so judgemental and can only assume I was having an off day or something. Not that it's an excuse. Anyway, really sorry for what I said. I have to make clear that I'm not against any alternative therapy in fact quite the opposite as I've tried many over the years and firmly believed in them. None of them worked for me personally apart from improving my diet which has helped. I was under so much stress at the time of trying them that it may be that I needed to deal with that side before anything else could help. These days I take a more 'what works for some may not for all' approach and I welcome coventional treatments too as some symptoms have improved on medication. It's just what works for each of us at the time I guess.

    Anyway sorry again for my post, I really am.
     
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  13. Molly98

    Molly98 Senior Member

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    Oh where to start regarding alternative medicine.

    Love the philosophies behind these approaches, love the natural ways, not filling my body with chemicals, have tried acupuncture, herbal medicine, homoeopathy, shiatsu, meditation, therapeutic yoga, shamanic healing, Tai massage even bloody crystal and chakra healing and the list goes on, ( yes I have a few funny stories to tell). Years of psychotherapy for PTSD and after all this money effort and expense, you know what the only bloody things that work for me are god damn sertraline and Lyrica. No they haven't cured my ME or PTSD but they have given me some symptom relief.

    I live 10 minutes away from a small town called Totnes - it is literally the UK Mecca for all things spiritual, alternative, holistic and green living. I literally can not go anywhere locally ( not that I ever do go anywhere much anymore) without being told have I tried this or that, or thinking positive and its all about energy, mainstream medicine is generally found on by many down here. I feel like a bloody failure that none of it works for me and only the evil and sinful mainstream medications of sertraline or Lyrica help me.

    I can totally understand @joseyw wanting to share and rave about what has worked for her and her excitement in getting her life back, but I equally share @Lissyleigh and others feelings of frustration and annoyance at being told this over and over again when people join here to share their success of a certain approach, especially when many on of us on here are not closed minded and have tried many many approaches to try and get better and many of us have been ill for an awful long time.
     
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  14. Lissyleigh

    Lissyleigh

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    Molly, thanks so much for writing exactly how I feel and would've wanted to write! I share your frustration and sadness at none of the alternative treatments working, and being asked over and over again have you tried this, that or the other, when you have and none of it has worked. I used to sit so firmly in the alternative camp especially as I'm interested in spirituality, but have had to re-evaluate this due to the fact none of it has really helped me. The main relief I have found is through conventional medication. I have felt a failure over the years especially when many people involved in alternative therapies or spiritual approaches seem to take the view that we haven't tried hard enough or truly believed we could cure ourselves. I did try, and I did believe.

    That is why I reacted in a hostile way of Josey's post. It wasn't meant, but it is frustrating to have tried everything and kept a really open mind (mine couldn't be any more open!) but eventually have to reach the conclusion that for whatever reason it hasn't worked for me. I have faced so much prejudice and disbelief from all angles, even been told I want to be ill, just because it hasn't worked.

    These days I try to accept I'm ill and that;s the way it is. The three natural things that have helped me are eating a good diet (avoiding problem foods), keeping stress to a minimum, and pacing. Other that that, I keep taking the meds that ease my symptoms, and hope for a medical breakthrough.
     
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  15. Kina

    Kina

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    @Hip you are missing my point totally, no need to discuss it further. To me this says if you remain closed-minded re: alterative therapies, you won't get healthy so basically it's all your fault for staying sick due to your closed mindedness. I have read the same kind of comment here and other websites -- if you don't believe a therapy will work or say there is nothing to support it working -- the person promoting the therapy automatically does the 'close-minded all your fault you are staying sick' thing.

    People with ME have earned the right to be cynics or skeptical due to the nature of the illness, it's easy to get away with promoting quack therapies when cause is basically unknown and symptoms are so diverse. People with ME have earned the right to be cynical -- PACE trial debacle, XMRV debacle. And not every comment about alternative therapies has to be accepted without cynicism. You also can't tell how much a person has or has not investigated something just because they make a cynical comment.

    You have no idea how many people the moderators don't let into the website because they are pretending to be patients and selling something or practitioners -- ranging from Naturopaths, Doctors, Dentists, Chiropractors who don't mention ME/CFS or who they are and try to post links to their own businesses or products. We get people who produce products posing as patients and get caught because they use their products as their user name and their email resolves to their business. Sometimes people will come along with an initial glowing post about something and then a few posts later, they drop an advertising links. You probably don't realize we have a user group that consists of suspected advertisers and we catch many of these people posting links in their first post because our suspicions were right.. Members don't see this. We keep this forum remarkable free of spam and advertisers. Some get through and we have some very good members who always report them to assist with keeping us spam-free. I think a certain amount of skepticism can be healthy on a forum.

    Don't feel bad -- read my comments above re: this forum gets a lot of dodgy advertisers/spammers. If you do feel a new member has posted something suspicious, then report why and we will check it out. If the post you report disappears, you can consider your suspicions to be true. I think the OP in this case is just exuberant about what helped her and it did come across as a bit spammy because we didn't even know what her diagnosis was.
     
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  16. Molly98

    Molly98 Senior Member

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    I can really relate to everything you say here @Lissyleigh, I don't want it to be this way but it is and really agree with the pacing, keeping stress to a minimum and diet to prevent worsening.

    @joseyw may also not yet of had the experience of feeling like you are getting better and going into remission and feeling like you have got your life back and beginning to do things 'normal people' do only for it to come crashing down around you again when you relapse.

    You thought you had mastered it, got the better of it, you thought you were in control, thought it was behind you and then just when you thought yay I am better, ME floors you again and you are back to square one and realise the truth is, this disease is in control not you and you were a fool for thinking you were so invisible.

    @joseyw enjoy it and savour every minute of it while it lasts and while you are doing well, do all the things you want to do ( though not over doing it) go the places you want to go and make the most of it because you really can't take for granted that your cured and won't relapse with this disease it's particularly cruel in this way.
     
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  17. Lissyleigh

    Lissyleigh

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    Thanks kina id missed your earlier responses somehow but thanks for pointing them out. Yes I think it was the fact it was an initial post that concerned me. Yes I will just report any future concerns.

    I'm glad it was genuine and that something has improved joseys health and hope it continues for you josey.

    Molly, the sudden and dramatic relapses after seeming to be doing so well is definitely the cruelest apart of this illness.
     
  18. Eastman

    Eastman Senior Member

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    If you believe that alternative medicine and TCM in particular don't work, I guess you will find the latter statement insulting.

    I happen to think that TCM can provide benefits in certain areas but, like many dietary and lifestyle approaches, can be difficult to prove.

    Incidentally, Bdeep86's theory on Over Activation of Farnesoid X Receptor In the Ilium Driving Liver and Gut Disharmony is partly inspired by TCM.
     
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  19. Kina

    Kina

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    Actually I believe some Alternative Therapies can have beneficial effects but as cure for ME, not so much. I think TCM is useful in some respects too. The point being missed here is that the message suggests a 'blaming and shaming of patients' for not trying an alternative therapy(s). When does it stop -- How many alternatives therapies does one have to try just in case their health might get better, how much money needs to be spent before one is regarded not to be a cynic, regarded not to be contributing to their own poor health?

    There are many dietary and lifestyle approaches that have been proven to help with some diseases even cure diseases -- like vitamins for vitamin deficiencies (eg, Vit D for Rickets, Vitamin C for scurvy), controlling sugar intake for diabetes etc.
     
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  20. Eastman

    Eastman Senior Member

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    There is, of course, no proven cure for ME. But to me, that only supports joseyw's point that if you don't try something different, you may not find relief. As for how many alternative therapies one should try, I have no idea. joseyw didn't set a requirement.

    They are difficult to prove, not impossible. There are many other treatments that remain classified as 'insufficient evidence'.
     
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