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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Faith Healing Discussion

Discussion in 'Spirituality and ME/CFS' started by Carrigon, Feb 25, 2010.

  1. Carrigon

    Carrigon Senior Member

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    Moderator Interruption: This thread is made of posts from another thread and was not started by Carrigon.

    I never intended to start a faith healing discussion. I only replied to the other thread.
     
  2. kurt

    kurt Senior Member

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    What do you mean by placebo? If you mean a self-delusion then I disagree. But if you mean some unknown physical process that is governed by thoughts, I might agree. Some cases I have known about might be that type of placebo, but maybe that is one of the mechanisms of faith healing. The brain is pretty complicated and we do not understand it very well yet. Also the mind appears designed by nature to experience belief-based phenomenon. In fact all learning has an element of belief, you have to believe the teachers, then try things out without being certain they will work, before you really get new skills or know anything for yourself.

    Anyway I have always thought that any type of healing was temporary, be it medical or faith-based or some other cause. As I remember the slogan from an Economics class years ago, in the long run we are all dead. We don't ever get younger so probably also there are limits to all types of healing and recovery. Still, I am willing to try out any form of healing, in fact they all probably have something to offer to some people.
     
  3. Carrigon

    Carrigon Senior Member

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    Placebo, same as if you take a pill, think it's helping for awhile, and then you go right back to how you were.

    I think, until there is a real blood test and we can really prove who has what and if there are subsets and what is causing the subsets, it's very hard to prove or disprove a claim of "healing" because we don't really know what exactly that person has or doesn't have that is causing their particular illness to begin with.

    We all get desperate with this disease. If I thought a voodoo doll would heal me, I'd probably buy one :D I've actually known people with CFIDS/ME who went down to South America and had real voodoo style rituals performed trying to get well. Didn't work. I've also known people who bathed in holy waters in different parts of the world, that didn't work either.

    I think what I dislike about faith healing threads is that they imply that the rest of us don't have enough belief and faith. That we aren't religious enough. We're just not praying enough. Just as much as the "healed by Wessely" camp implies that we aren't happy enough. We're just not singing the happy, happy, joy, joy song enough.

    People will believe what they want to believe. I have seen miracles in the world, sometimes very small ones. So my answers aren't really about that faith healing is bogus, my answers are about how these types of threads are preachy and condescending, and we really don't know what a poster of a thread like that was really sick with until we have a real confirmed blood test for CFIDS/ME. There can be a thousand reasons why someone suddenly gets well that may have nothing to do with their having done a faith healing. Maybe they had a parasite that suddenly died that day. Who knows. Life is strange.
     
  4. kurt

    kurt Senior Member

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    Carrigon, you have reminded me of a strange CFS remission case. I knew a man from Switzerland who had CFS and went to a shaman ritual somewhere in Central America. They had a ceremony and gave him a drink, and he was completely well for some hours. Even his full strength returned. He lifted a heavy boulder, etc., something he could not do ordinarily, with no repercussions, PEM, etc. He and I discussed this for months and concluded it was probably the contents of the drink (Ayahuaska) which included DMT elements. Well DMT is one of the candidate molecules for some faith healings, it is produced in the pineal gland and released often during spiritual experiences and can induce visions and things like that. Oh yea, he also had visions during the religious ceremony. In some ways religion IS a primitive form of science and medicine, but that is another topic. Anyway, I think there are physical explanations for everything, including faith healings, and so in a sense there are no miracles, only things we do not understand. If there is a God (which I accept as possible) that God works through some means, some mechanisms, nothing is magic. Just my opinion but I think eventually science will catch up with all of this and it will all be shown to be real but subtle.

    And I totally related to the frustration with the argument that 'if you did not get well you did not try hard enough.' What a cop-out. But that does not discredit the idea of faith healing, it simply shows that there are rules in that domain like any other and we just do not know all the rules. Maybe the Universe/God has an opinion and decides based on some criteria unknown to us who gets and does not get a healing...

    Cameron, there are many significant biological effects of our thought process. Stress itself lowers NK levels and other immune functions. Everything in the body and mind is interconnected in some way. Certainly some religious or faith-based cures could be due to emotional effects, but some appear not to be. That does not bother me, we do not know everything, who knows what is possible? Anyway you can question religious healing all you want as far as I care, but I just want to point out that unless you can talk with God you will never be able to fully evaluate religious healing scientifically. Some things are not measurable now, but that does not mean they do not exist. We see the effects and that is enough to say 'there is something there that we do not understand yet.' That is a very scientific statement to make and good scientists are not afraid to point out what is not yet known. Faith healing is in that category, a skeptic might say it is impossible, but a scientist would say it is beyond what we can measure right now so we just do not know.
     
  5. Victoria

    Victoria Senior Member

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    Faith healing.
    Placebo healing.
    Drug healing.
    Diet healing.
    Magic healing.
    Surgical healing.
    No method healing (I woke up tomorrow morning & was healed - a miracle?)

    We have illness, we have drugs, or supplements, or diet, or surgery, or faith, or rest, or go to church, or all of the above treatments.

    We are healed.

    Now tell me 100% which of the above was the healing factor?

    You can't, just as I can't. I don't have the gift.

    A hundred patients might have exactly the same symptoms & diagnosis. And there might be 100 different ways to heal these hundred people.

    But it's the final result that counts, HEALING, not the way it happened.

    Healing is healing.

    Sometimes, I wonder if people judge others through lack of understanding. There are some people who are too narrow minded to conceive the inconceivable. Miracles do happen. What right have any of us to determine what shape or colour those miracles must be defined by (to be classified as a miracle).

    Those that "think outside the square", have the opportunity to see beyond the obvious. To think the unthinkable.

    I am not religious, but I do respect those of religious faith.

    And I feel Happiness for those that are healed, for whatever health condition that debilitated them - their mind, body or spirit (or all three).

    After all, who am I (to judge).

    Who am I (to see).

    I am just one drop in the ocean.
     
    Tammy likes this.
  6. brenda

    brenda Senior Member

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    I have experienced healing through prayer myself so I don't find it hard to accept others who tell me they have been healed. Christian healing is such a complicated subject and yes some do get healed then have it back again in a few weeks and no-one knows why but there is a theory that they got healed by the devil instead which is another pandoras box, like Satanists and witches who get healed, and this is why it did not stick. The theory is that the healing was given to them to mislead them through some iffy ministry so they would go off track with their faith.

    But my healing did stick. It was not long after I caught Lyme but did not know it for 10 years, and was severely ill with Lyme meningitis I think, and probably a stroke, as a Lyme doctor told me. I become sensitive to everything and could not even wash in chlorine tap water or eat anything but rice - everything made me much worse and I think that I was in danger of dying at that point as some do with Lyme, and I already had been poisoned twice with mercury once at 5 months old and a massive pesticide exposure so I really was sick. In fact, the fact that I am still alive and nearly 60 is a miracle itself.

    Anyway I got a chest infection when I was at a healing ministry weekend, taken there by a friend who has ME in her husbands car, and I lay in the back with a blanket and air mask because I could not tolerate traffic fumes and a hot water bottle as i could not tolerate normal temperatures. At the ministry there were a few beds at the back for the sickest, but I could not even stay awake during the meetings and prayers and a woman kept trying to keep me awake and prop me up. I am unable to take any medications so that meant no anti-biotics either and with being away from home I could not keep up my usual routine of steam inhalation.

    So anyway I started to cough up blood which is a bad sign and my room mate was worried about me all night and kept checking to see if I was still breathing. I guess i should have been in an oxygen tent in hospital but the problem with severe MCS is that once they get you into a hospital your life is already at risk from the medications they want to give you. Some have died from this and in the UK there is the chance of getting a mental health order put on you to make you accept treatments.

    So I was prayed for and in an instant the infection left me and I lived to tell the story. The next day I was up out of bed and eating a normal diet and continued to improve.

    I have also seen off other infections since and recently salmonella which by normal accounts should not have happened as my immune system is so down.
     
    Gloria H likes this.
  7. Knackered

    Knackered Guest

    Does it make you wonder why 16,000 children die of hunger everyday? That's one death every 5 seconds, count to 50, that's 10 little innocent children who your god didn't save. Why do you suppose all those people die everyday and you didn't?
     
  8. flybro

    flybro Senior Member

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    I do think Camerons thread title is inflamatory, (sorry Cam)

    Most people know that the faith/science debate is frought with danger. Combine that with the politicised view of ME, add to that the confusion over diagnosis critereria and you have a mixed bag of people benefiting from very different treatments.

    When someone claims to have found a treatment that works we all jump on it, we want to know everything about there illness, and everything about their treatment.

    Look at how XMRV+'s were treated, we were all over them, asking about symptoms, onset and every aspect of life you could think of. So much so it gave rise to a survey.

    However thefreeprisoners miracle healing wasn't afforded the same level of scrutiny.

    I think we should be able to discuss all aspecpts of ME/CFS with equal rigour.
     
  9. Min

    Min Senior Member

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    There are many religions in the world that claim miracles and faith healing - some of these claims can be disproven, but not can be proven. I could claim that I believed the tooth fairy had cured my tooth ache, and others might disagree but no-one could disprove it.


    I am very sorry that Cameron's thread was locked, as clinical diagnosis of ME/CFS is based on the patient having had symptoms for at least 6 months & therefore the question put seemed very valid.

    The person who claimed her deity had performed personal miracles for her did make me ponder whether the same deity was too busy doing so to help the Hiatians.

    Apart from being made uncomfortable by threads claiming miracle healing, I am now concerned that a moderator here is perhaps abusing the position by forcing personally held religious belief on others. Would the same moderator be happy if Sikhs, Wiccans, Muslims, Rastafarians etc were here claiming their deitys' supposed 'interventions' in their lives as unquestionable facts?
     
  10. brenda

    brenda Senior Member

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    Knackered I have no answer for you and no-one knows how many lives God does save every day or why it is not all of them. Many aircraft flyers on WW2 had stores about miraculous life saving even among the unbelievers and stories of angels being sighted. This was reported by highly trained intelligent pilots not neurotic women. I wish all suffering was gone and do not know why it has to continue but my nearest guess is that the universe is as it is due to man being granted free will.

    As a side note I would just like to point out that talk about Christian healing is by no stretch of the imagination taking over the forum and apart from a deleted thread a while ago, there has only been 2 threads discussing what after all is a fact ie that Christians with ME are getting healed and this must be very well known in medical circles as I can assure you that the healed will take great delight in telling their doctors what has happened in order to witness what God has done for them. There is no need to think that this must be hidden to avoid the medical profession from getting the wrong idea. It is far too late for that.

    Buddhists are left alone on their thread to discuss what they want, and I can only say that it is gross religious intolerance not to allow Christians to discuss something on the community forum without snide remarks and outright attacks on their faith.
     
    Gloria H likes this.
  11. Knackered

    Knackered Guest

    There was a fantastic philosopher and mathematician called Bertrand Russell who wrote:

     
  12. Knackered

    Knackered Guest

    I think it's because your life's worth so much more than 5.8 million children per year.
     
  13. brenda

    brenda Senior Member

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    That's right Knackered spit out your venom but your issue is with God not me.
     
  14. CBS

    CBS Senior Member

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    In 1998 I had what turned out to be a six year remission to nearly 85-90% of normal function. I respected the 85-90% and wasn't too worried that I wasn't 100%. I was thrilled to be doing so much better than the 40-50 (bell scale) with occasional periods in the 30's that had characterized the previous 4 years. In the two years leading to the remission I had eliminated ALL unnecessary activity and stress, meditated, etc. Anything to bring down the overall load of what ever my body was coping with.

    Over the next six years I continued to have intermittent symptoms but they were relatively intermittent and mild (although my wife was convinced that something was still wrong and that someday we'd have to deal with it - but she was more than happy to enjoy the reprieve).

    In 2004, I got myself into a situation of significantly increased stress (thought it would be a good idea to return to grad school). Six weeks later I was as sick as I had ever been. Out of school and out of work. The start of a downward trajectory that only recently has begin to turn upward again but at a much slower pace (anti virals).

    In retrospect, I am convinced that the rest was a key. Rest that allows the immune system a chance to recover is a key to anti-viral success (If you are having days when you are crashing or need significantly more rest, the though is that you are doing to much and setting yourself back by not letting your immune and neural systems heal). I also wonder whether or not the cortisol that I started at the beginning of the period of remission made a difference because it was replacing a deficit (I had documented secondary adrenal insufficiency and with the addition of low dose cortisol a number of my other hormonal abnormalities normalized) or because of its anti inflammatory effects (not common at low doses) or perhaps because of both replacement and anti inflammatory effects. It was interesting that a few years ago I developed a florid case of Diabetes Insipidus. Like Secondary adrenal insufficiency, DI is also a disorder of the hypothalamus/pituitary and my MRI showed a clear cyst in that area. My endos best guess is that I was suffering pituitary caused adrenal insuff. and that inflammation was also a likely contributor.

    My point is that sometimes it isn't clear why we respond as we do (sometimes not right away and sometimes perhaps never). I rarely share this story as I don't know how relevant it is to others and I think it would be misguided for someone else to blindly follow my path. I have what all my docs agree is a slightly atypical constellation fo co-infections (solidly documented and significant,and with nearly all of the manifestations of 16 years with severe CFS/ME but still, the a few of my co-infections are somewhat atypical).

    Take this for what it is worth. Even AIDs patients all have their own constellations of co-infections and they respond to a variety of therapies. I don't think that many of us with long standing CFS (or CFS that will someday be longstanding - how to identify who those unlucky people will be is a major question in CFS research) are experiencing a dynamic that is much different from those with HIV.

    It is an unfortunate fact that many with CFS are self-diagnosed through no fault of their own given the paucity of good CFS doctors. I would just caution anyone who suspects tha \t they have CFS but have not been experiencing symptoms for more than 6 months to head the diagnostic criteria and to keep looking for other causes (keep doing so even after six months). A lot of things can cause an extended period of fatigue (including emotional strain). A good friend was recently diagnosed with hypothyroidism after years of exhaustion. One month later he's well on the road to recovery. Believe me, thyroid patients are definitely treated better than CFS patients (and they improve at a much higher rate). It's a lot more fruitful and a lot less disparaging than the treatment to which most CFS sufferers are subjected.

    As for the spiritual/emotional aspects of healing; it has been my experience (and only that) that a positive outlook as well as a sense of meaning can go quite some distance towards mitigating the destructive impact that stress has on CFS but it has been my experience that on its own, the important spiritual/emotional aspects are nowhere near sufficient for recovery or even sustained symptom mitigation.
     
  15. Knackered

    Knackered Guest

    Which one?
     
  16. Carrigon

    Carrigon Senior Member

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    CBS, remission and the mystery of the fool's paradise. I had it happen in the 80's for a few years. I first got sick in the mid 80's. Fibromyalgia, most symptoms went into a quasi remission within two years and I was able to go to collage part time and workout at a gym two and a half hours per day and come home and do more. Anyone looking at me would never have known something was wrong. I was in total denial, too. Even though I was only able to go to college part time because if I did anything more, I'd get sick. I had all kinds of neurological symptoms, too. Everything from severe insomnia to where I was literally eating benadryl to sleep every night and actually working out to physically exhaust myself so I could sleep, to the short term memory loss and concentration problems. I have no idea why in went into a quasi remission and I was able to workout and have half a life. No clue at all. All I do know is, it was a fool's paradise, what they used to call these remissions back in the days of syphilis. And when I got hit in 91, it was all back with a severe vengeance and more. Viral onset, combined with severe stress.

    Over the years, I have met many CFIDS/ME patients who had remissions and then relapsed far, far worse than they were before. No one really knows why. But the remissions seem common.
     
  17. brenda

    brenda Senior Member

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    Knackered, why are you so angry with a God you don't believe in?
     
  18. [puts moderator hat on]

    Min... lots of discussion went on about the forum rules and moderation tactics here: http://forums.aboutmecfs.org/showthread.php?2144-Comments-on-the-Forum-Rules/
    The thread was locked before I arrived, but I think it would be a worthwhile read to see how the rules were created and the philosophy behind moderation. You're welcome to feed back to any of us mods about moderation tactics in a PM or in the Nuts and Bolts section.

    [takes moderator hat off, puts just-me-now hat on]

    I think this is a worthwhile question to ask: is one method of treatment for ME morally or scientifically superior to another? Personally I think that methods that have been demonstrated to cause harm are inherently inferior than others.

    I was and still am intensely interested in all treatment methods that are shown to be reasonably safe and are recommended by other members of this forum. Especially XMRV treatments as I am excited about XMRV for everybody's sake.

    In early January after my neurologist told me she thought my condition was probably Post-Viral Fatigue Syndrome, and advised me to self-treat it in the way I did before, I decided to try a variety of different treatments. I originally intended to try one at a time in order to make my method a little more 'scientific' (a fruitless pursuit really as other members have commented in my "calling all statistical people" thread).

    I ended up being a little haphazard in my process. Here are the things I tried: elimination diet, paracetamol, zantac (both of which forum members actually cautioned me against, but I took anyway as I believe that over-the-counter remedies are safe in small doses... the zantac only had the effect of reducing the cold sores which had arrived at the same time as I got sick), pacing, pro-biotics, dark chocolate and vitamin supplements. I was desperate to get well. This desperation led me to ask for prayer wherever possible. I thought: "Well, this can't hurt." I wasn't expecting it to actually work to this degree of improvement; I simply expected more placebo-ey effects like slight reductions in symptoms and a feeling of peace. In the end it was the only thing that did work as far as I can tell to any significant degree, except paracetamol which subjectively seemed to lead to reasonable if slight improvements.

    From what I can see, threads on Shamanism and Buddhism are accepted and welcomed here as I'm sure would Sufi/Islamic healing practise, Hindu ritual and whatever else there is. Many of the posters accept these beliefs as facts, or at least treat them as facts for the purposes of discussion.

    I have learned a lot from reading posts like that here about religion. In fact not so long ago we had an interesting discussion about whether people are 'to blame' somehow for their illness and I found that conversation really helpful. Some people appeared to state as fact that blame is implied in sickness which I disagreed with. I felt that was an important discussion to have, and I learned a lot about the concept of karma which was not quite what I thought it was. There was also a posting which mentioned a Taoist story of a farmer, which I found transformational and helped me through some dark times when I thought I'd be facing bankruptcy and homelessness.

    So, I personally am quite comfortable with discussions about religion in any shape or form (yes that includes you, flying spaghetti monster) as long as they are not personal or insulting. From my own experience in some pretty intense debates about faith, I find myself much more open to people who argue against my ideas in a funny, kind and respectful way. But that's just my sort of pragmatism I guess... as one of my (atheist, incidentally) co-workers quipped only yesterday "Getting angry at somebody isn't a great way to win them over."

    Rachel xx
     
  19. Knackered

    Knackered Guest

    I'm not angry with any god, using your logic the reason you don't believe in any other god other than the Judeo-Christian god of the bible is because you're angry with them. I'm not angry with your god and I'm not angry with any other god either. Which god do you think I'm angry with? There's a lot to choose from.
     
  20. Knackered

    Knackered Guest

    ME morally - I suppose you mean religiously? I'm not quite sure how you'd treat anything with the concept of right or wrong behaviour.

    If you had cancer, would you rely on prayer and seek no treatment? If your daughter laid dying of diabetes would you pray or seek treatment?

    Fortunately your period of illness was mild and short in duration. For others we've been in hospital, we can't leave the house and we're ill, every single day, some people for 20+ years. For you to suddenly get better and say WOW! GOD DID IT harms us. I've received a lot of PMs thanking me for my posts, even from Christians. Making light of our illness does harm Rachael.
     

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