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Discussion about concerns that some dodgy treatments get promoted by patients to patients.

Discussion in 'General ME/CFS Discussion' started by Esther12, Oct 5, 2014.

  1. Esther12

    Esther12 Senior Member

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    Following on from a discussion here: http://forums.phoenixrising.me/inde...lgium-doctor-after-failed-by-nhs.32918/page-2

    that really moved off the topic of the thread with this post from @Jonathan Edwards :

     
  2. JalapenoLuv

    JalapenoLuv

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    Because most people are on health plans, off guideline MD experimentation is discouraged. However, when you have biased interest group panels making the guidelines like they are for CFS then they exclude possible herbal approaches that might be beneficial in favor of expensive pharmaceuticals.

    MDs should have leeway to try off label drugs, herbal supplements etc if they think that it could benefit the patient. Unfortunately, there is a culture of fear among doctors about trying these treatments because they think they might get sued. Also, the economic incentives push rapid office visits.
     
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  3. JAM

    JAM Jill

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    It would be great if we went through all that with pharmaceutical drugs, many of which are very toxic, but no one loses their children for taking that risk.
     
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  4. user9876

    user9876 Senior Member

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    Doctors have a duty to discuss potential benefits and side effects with patients where they are off label uses this is very hard. If a patient is very aware of the risk reward ratios that may be OK but how many of us have that knowledge. How do we find that information and how do we know that the doctors making these choices are accurately representing the dangers and benefits.

    The point is these are dangerous drugs. For example, Prof Edwards talks about the use of corticosteroids- I have seen severe side effects from steroids when my wife was on them and it was only worth it because the benefits were absolutely clear for the disease she had (not ME). I should also add that these were given with a huge amount of monitoring even prior to any side effects including when the doses were high being kept in hospital.

    The idea of such drugs being given to people where the benefits are unclear is bad. Prof Edwards suggests its particularly bad where children are concerned which I agree with but I think adults can also find it hard to make truly informed decisions and hence receive inappropriate treatments. I would worry about doctors who see patients, give them strong drugs with little or no monitoring. Where specialist doctors are giving drugs that they are used to prescribing they look out for side effects, they know how often to see patients and what to look for. I find it alarming that people are traveling large distances getting given strong drugs and then seeming to be left alone with few checks on side effects. Perhaps anti-virals are another example of a drug that seems to be given out with little evidence from trials but that can have harmful side effects - again I know when my wife was on anti-virals they were damaging her liver (or perhaps kidney can't quite remember) so her doctor pulled her off these but could do this because regular testing was being done.

    One of the common objections to things like GET and CBT is that there are many reported cases of them making patients worse coming from a lot of patient surveys. That is one of the reasons why people here are so concerned about such treatments because we think the benefits are overstated from what gets published in papers and the risks are underplayed. But we need to apply the same reasoning to all treatments.

    Even when we have proven treatments for example if Rituximab proves itself in trials I think we need to be careful how such treatments get rolled out and that there is sufficient monitoring to help mitigate any risks.
     
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  5. Esther12

    Esther12 Senior Member

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    This is a bit long and rambling as I'm not too sure what I think about these issues, and am hoping others can help me work things out a bit:

    I'm not sure if there was a bit of looseness to the language here or I may be misunderstandingyou, but personally, I think that 'common sense sympathetic psychological support, optimism and encouragement' is the most harmful medical intervention I've had to endure. Just because people have been diagnosed with CFS/ME does not mean that they should have any sort of optimistic spin put on the information that they are provided with, or that they should be encouraged to be or think one way or other. I don't think that having CFS/ME means that people have an unreasonable lack of optimism, and positive distortions of thought can be as harmful as negative.... but side stepping that, I do have a concern that dodgy claims about biological interventions are not criticised anywhere near as rigorously as dodgy claims about psychological interventions.

    From what I have seen, the general forum response to psychological treatments seems pretty reasonable (although I realise that the tone and anger around this issue is likely to seem unreasonable to many of those who have not had to face some of the problems related to it) - lots of people talking about finding psychological support having been helpful, lots talk about finding it unhelpful - it's left to individuals to decide what is best for them. Generally, those who report problems with depression or anxiety are encouraged to talk to some sort of mental health professional. There's a lot of legitimate concern and anger about the way exaggerated claims are made about the benefits of psychological therapies for CFS/ME, but also a recognition that within the groups of people currently classed as having CFS/ME there will be some who find them very helpful. Seems about right to me (with some people being too negative, some too positive) even if it's sometimes expressed with language that seems to lack nuance ('psychological' and 'physical' can be used in very short-hand ways, 'CBT' is typically assumed to mean Chalder style CBT, etc).

    With biological therapies that are being promoted with a poor evidence base, I find it at lot harder to be critical of them because i) they often make claims about biological processes I know nothing about and that it would take a lot of time to research, ii) there are so many different things in different permutations that it's almost impossible to really keep on top of them, iii) when they're openly being sold as experimental I find it difficult to know to what extent patient choice trumps concerns about a poor evidence base. I'll often just make a brief comment about the problems of spending time and money on interventions lacking in a good evidence base, but not much more than that.

    As an example, I've had a few discussions here about 'Chronic Lyme' and the alternative testing used that leads to lots of people with ME/CFS being diagnosed with a chronic Lyme infection. I am concerned that alternative and unreliable tests get promoted, and there has been a paper showing that one lab popular with alternative/Lyme-literate doctors (IGeneX) was selling totally unreliable testing. But that particular test has been withdrawn, and there are no papers assessing the testing currently being sold under blinded conditions. There has been a long history of people claiming that testing shows a high percentage of those with ME/CFS really suffer from a chronic Lyme infection, but no good evidence supporting this has emerged, when it certainly should have if it were true. But it's hard to be sure of anything at the individual level, where mainstream testing for Lyme is still far from perfect, and there has been a problems with unfounded reassurance leading to people who really have Lyme being missed and people whose Lyme infection leads on to long term symptoms being treated dismissively. While I understand that the 'mainstream' approach has been improving this history has led to understandable distrust. I've put quite a lot of time and effort into some discussions here, reading the available research, etc, but I think that I do very little to really encourage caution from those who are seeing an alternative doctor they like, and get told that their test results (with real numbers on a real print-out) provides an explanation for their illness and a clear path for treatments. With posts from a few people who have reported improvements from a dodgy treatment protocol following dodgy test results and I can see how, to most patients, my concern and uncertainty is of minor interest (and it's clearly not possible for me to be certain that someone who reports a positive Lyme test from an alternative doctor does not have Lyme).

    From what I've seen of other forums, general interest ones like Mum's Net and ones related to health conditions like MS and cancer, this is a pretty common problem. Scepticism and picking claims apart is a lot more work that making positive and exciting claims about how people can improve their lives - seemingly less fun and financially rewarding too. I know that a lot of members here are sceptical about claims being made by others, but don't have the time, patience or health to criticise it. Considering how much more powerful and important the problems around the promotion of psychological therapies are, I think it is fair for people to put more time and effort into examining those claims, but I do also share a concern that this creates a double standard.

    On all forums there is a degree of self-segregation, with people reading and posting in the topics that interest them. For some slightly obscure and technical sounding intervention this will mean that any thread is likely to attract more enthusiasts than sceptics. Maybe this is worsened by the distrust of mainstream medicine that the history around ME/CFS has led to, but tbh, I see pretty similar things on a lot of other health forums. It would be great if everyone hear really had the time (and access to papers) that would allow for every claim being made to be thoroughly examined, discussed and debated, but that's not going to happen.

    I'm not sure what realistic way there is of improving things. Really, it seems like there's a growing acknowledgement that there are systematic problems with the way data is presented in peer reviewed papers - a system that has a lot of money and institutional support behind it - what can we realistically expect from a patient forum? I think it's good that some problems do get chipped away at here, and maybe that's as much as we can do?

    Also, on double-standards - I myself have spoken positively of 'meditation' and 'mindfulness'. I try to do so in a very cautious manner, but really, I have no more evidence that these things are of any value than any of the weird and not-so-wonderful biological interventions that occasionally get promoted. Why do I think that my speaking positively of those things is any more respectable than others speaking positively of some strange-sounding supplement? I think that there could be a cultural double-standard that down-plays the risks and costs of psychological and behavioural interventions, when really, these things can be much much more of a costly chore.
     
    Last edited: Oct 5, 2014
  6. JAM

    JAM Jill

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    I think perspective has a lot to do with it. I don't trust MDs any farther than I can throw them because all I have gotten from them in 39 years is blame, denial, prescriptions that made me worse, and a few scars from unnecessary surgery. Psychiatrists are on par with MDs, both of which seem to be little more than shells for the pharmaceutical industry in my experience. I trust psychologists more, even though I have had a 50/50 split of great and horrible, but the good ones really helped me with the PTSD caused by the pain associated with a lifelong chronic illness. My trust in NDs is the highest, because my diagnosis and treatments have come mostly from them or their research. But mostly, I trust myself. I've tried things that I was told I was crazy for trying with excellent results, and passed on things with tons of recommendations because they didn't make sense to me, Zoloft while pregnant being one. Turns out that caused heart and lung problems in female offspring, so my daughter is really glad I passed on that one. When I started meditating in the late 90's people said it was mumbo jumbo that did nothing. 20 years later we know differently, is it a cure, no, but has anyone suggested that it is? All but one of the things I have tried did nothing to deter the CFS, but they did help with the symptoms. I find it concerning that in our society trying an herbal anti-viral instead of a pharma one makes us "crazy" or a danger to our children when the side effects of the herb are null and the pharma version can cause death. As a skeptic and naturalist it looks to me like science has been co-opted and rationality replaced by greed in our medical system. That is my 2 cents and change.
     
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  7. Esther12

    Esther12 Senior Member

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    I do think that there's reason to be concerned about exaggerated claims being made for the value of some drugs, and also there is a problem with getting funding for testing 'natural' interventions, eg: there has now been a study showing ginger is an effective treatment of nausea, but no one can patent and profit from ginger as a nausea treatment, so there is less incentive for this sort of thing, but also some people can be ideologically committed to a preference for 'natural' treatments and assume that they will be more effective and less harmful in a way which is not reasonable. If your NS (? natural doctor?) is recommending stuff that isn't supported by good evidence, then I think that is a bit dodgy.

    Personally, I'm not interested in experimenting with stuff on myself and think that this sort of thing can lead to people wrongly attributing improvements to interventions which are worthless and costly. I also recognise that there is a possibility of this sort of experimentation leading to benefits. A lot will come down to people's personal preferences.

    Also, I just remembered that when I was first a member here I would often advise people to set a baseline try to do the same amount of activity everyday. This seemed to be something that was so commonly advised for CFS, and didn't seem obviously loopy, that I happily passed the recommendation on to others. There was never any good reason to do so, and following this advice made my own life worse. Why did I do it? Partly I think that we like to think we're doing the right thing, and that there is a 'right thing' to do? Giving advice tends to feel nice.

    I can't think of any illness for which it would be a good idea for people to really try to do the same amount each day - human life just doesn't work like that. I can't really recall my own reasoning on this one, but I think that there is a tendency to downplay the burden of these sorts of behavioural interventions.

    Also, I have spoken positively of a few different types of exercises: pilates, etc. I think that this was just because any activity which one starts to doing will lead to improvements in one's ability to do that activity, and this can be mistaken for real improvements in health. Around the three month mark, when it tends to become clear that I've just got more able to do one particular exercise, rather than seen any real improvement in my ability to do stuff, I'd tend to move on to something else.

    Now I try to avoid recommending anything!
     
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  8. DanME

    DanME Senior Member

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    Here is my opinion about this matter. I think Dr. Edwards is right, that we should be sceptical of any suggested treatment so far. We tend to criticize psychological treatment for ME (and rightly so) and call it bad science (which it mostly is), but praise on the other hand unproven drugs or unproven treatment protocols, which are at best harmless, but can be quite harmful and dangerous as well. Only rarely somebody asks, where the hard evidence is and wants to see the proper science. This is in fact a double standard.

    The cause of ME is still unknown and all the theories around are to this day just theories. Even if they are around for thirty years and sound very logical and promising, this means nothing, if we don't have hard evidence for them. This is why good critical science and randomized trials are so desperately needed. We have a lot of andectotal drug reports and maybe they can guide us in the right direction. But they are not an alternative for randomized trials and can also clearly misguide us!

    To be honest, I don't believe in a lot of things, theories and treatment protocols alike, which are sometimes promoted on PR. Probably some of us really have Lyme, but like Esther12 said, a lot of Lyme testing around is rather dubious and some labs don't follow the scientific consensus. Furthermore, if you just test some parameters often enough, you will certainly find some abnormalities just by pure chance. The same goes with the methylation protocol, which I honestly don't understand. I ve read a lot about it, but it seems to be inconsistent and again their is no conclusive evidence, that the methylation theory is correct. Just to draw conclusion from different studies is not enough. If there existed a randomized placebo controlled trial with a large enough cohort, which clearly would show a good benefit, I would try and recommend it. But otherwise I am just sceptical.

    On the other hand, I thin meditation and good psychological care (all with the foundation, that ME is a real and physical disease) can of course be benefitial and help to deal with this disease (I think, especially with depression and pain).
    I know, this is a slippery slope. It is not a cure and never will be and most of things, the psychiatrist say about ME are just outrageous.

    I am as angry about the lack of medical help and the lack of research funding as any one of us. And I am desperate to be better, too. But I also think sometimes, we should be more critical of suggested and promoted treatments here on PR and on other forums, too.
     
  9. JAM

    JAM Jill

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    My ND has only recommended things backed up with peer review study. It isn't dodgy at all. Much less dodgy imo than the docs who performed a hysterectomy on me when I was 23, 3 exploratory surgeries before I was 30, and prescribed pharmaceuticals that were known to cause blackouts and sducidal tendencies.

    I only recommend things that have worked for me, and most of them do have studies to back them up. And I appreciate hearing the experiences of others.

    Ideally, I would have a healthcare practitioner who knew as much about my diagnosis, possible treatments, and my body's reaction to things, as well as I do, but so far no luck. My own research and treatment has gotten me everything that has worked. I am very grateful for the diagnosis I got from my ND, but his recommended treatments were mostly things I had already tried (both herbal and pharmaceutical), and the one that helped for 5 days after each treatment I couldn't afford to keep up because it isn't covered by insurance. Everything else I have found on my own, asked him about possible problems (so far he has only said what I had already read), tried it, and reported my experiences back to him. Granted, I am a graduate student with access to medical journals and a background in wellness, and I guess that makes a difference, but I really think that most people are capable of researching the options as well as or better than most docs who still think this is all in our heads.

    The treatments that have worked for me, with the one exception above, have not been very expensive and I knew what the possible side effects were, so also not very risky, especially when compared to the pharmaceutical options which always seem to include death even if taken at the recommended dosage, and are exceedingly expensive. I don't assume anything is safe, but it is usually true that the herb will be safer than the pharma version. For example, Valerian is far safer than Valium. Would I drink a gallon of Valerian tincture? Hell no, but that is common sense equivalent to not taking the whole bottle of Valium. I think we as a group, including yourself, are more capable that you are giving us credit for.

    Also, I would rather try something like what you suggested with activity and have it not work, than not try. The negative effects of your suggestion are worth the risk, imo and experience.
     
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  10. JAM

    JAM Jill

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    Oh, and when I said I was a naturalist, I meant along the lines described here http://spiritualnaturalistsociety.org not that I only believe in natural treatments or something. I have tried some pharmaceuticals and am open to that as an option if something relevant appears.

    I'm enjoying this conversation, thank you for starting it.
     
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  11. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Thanks for the other useful comments Esther12. And on this point I guess it may be the difference between 'common sense sympathetic psychological support, optimism and encouragement' and common sense sympathetic psychological support, optimism and encouragement (without the scare quotes). That is, I am definitely not referring to the sort you get out of a can from 'trained staff'. I am referring to things like:

    Telling the patient that you understand that they DO have a serious physical illness that may be a long term issue.

    Insisting that a patient can be managed at home and visiting them there personally on a regular basis.

    Listening to what they have to say.

    Personally intervening when unsuccessful official policies are adhered to despite distress to patient and family.

    Etc.

    That is what I call common sense psychological support. Doing whatever you think you can to make life bearable. I guess it shows sympathy. And I have always thought one could be 'optimistic' without any need for a 'spin'. It helped a lot when my sister in law, who had once had to do the caring I was having to do, just said 'hang in there, you will get through', which could have meant anything, but picked me up off the floor. But I agree that the canned stuff is lethal.
     
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  12. snowathlete

    snowathlete

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    I think there is a problem with patients not being listened to. Patients have a unique perspective steming from their actual experience of this disease, and any treatments.

    Why do I have a very strong view about GET? Because I have tried it. It made me significantly worse and there is no doubt it was GET that caused that damage. Having experienced that, I then researched it and found that actually there isn't any good evidence for it being effective, and there is evidence that it can cause damage, as it did to me. I then thought, why didnt the therapist warn me of the risks? Reviewing all that is claimed about GET, I concluded it was because the therapist simply had bought into it, and really believed it would work and would be good, and that any claims of negative reactions must just be the lies told by some patients who are anti GET for some obscure reason that no-one understands.
    I see this as a problem.

    I've also had CBT, but I was fortunate that the psycologist was brand new to ME and I told her I only wanted a few sessions to help me come to terms with being so seriously ill. I am not anti-CBT by the way, my parents are both therapists, my mother runs a family therapy team under the NHS and my father trains social workers and is an expert witness in court cases regarding child protection. They also both offer private therapy and use CBT.
    But they say themselves that the idea of CBT working for ME is just plain stupid.

    So patients like me are actually objective, it's just that we're right and have experience that doctors who aren't sick with this disease will never have. And we're sick of people saying we're wrong. From the patient's perspective, havign ME is just as obvious and the same as if we had Ebola but were being told GET and CBT will sort it. It's just plain wrong. Obviously wrong. And while that's happening proper work to figure out what's wrong is supressed. It is an incredibly frustrating place to be. And so you do see patients being quite vocal about GET and CBT being crap, but it is because we are right and we ought to be listened to.

    Do patients over-support biological models and interventions?
    Perhaps, but I think that happens more with patients who havent had it so long. Patients learn fast. I tried methylation first when I came here and at first seemed to get a small boost from it, but basically I concluded it was just over stimulating things and then wore off. I expect a well person might have got the same bonus for a time. So you learn from trying and you learn from studying, and a lot of us study hard.

    From my point of view there is also a tactical element.
    Because there is little biological research in ME/CFS and there are much easier diseases to work on, more rewarding for sure, this means firstly that its important to support researchers who do research even if they arent maybe looking in the right place. Researchers learn too, and later they might persue a more promising avenue. Also, you can't be certain where the answer will lay, the cause of ME could surprise us one day.
    Second, a lot of the research is just pilot stuff because of lack of funding and so you get small sample sizes, which doesn't result in a big finding, may be no finding at all, or may be something important. You can't know. But its really important to support this work because it could be the start of something. So personally I praise such work more than it perhaps deserves, I am optimistic about it, because I think that is likely to help push things forward quicker and get us where we want to be, all the time stating what we need next, which is lots of good ideas being explored with well designed studies, with good sample sizes and so on. Treatments based on such early research though is risky and probably not a good idea, but it is every individuals choice which I suggest they should make after researching as much as possible.

    Edit: one last thing to add is that although methylation wasn't the answer for me, it apparently works for some and who would I be to dismiss it entirely. Maybe it does work for a subgroup of patients. Everything is somewhat open until good research can narrow things down and rule other things out.
     
    Last edited: Oct 5, 2014
  13. xchocoholic

    xchocoholic Senior Member

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    On every internet forum I've been a member of, the forum owners clearly state that the information given here is just the opinion of the person posting and everyone should do their own research.

    I looked for that here and the closest I could find is in the moderation section under "Please adhere to the no medical advice" rule. Imho it's definitely worth reading this if you haven't.

    In my humble opinion, the internet has opened our eyes to the inconsistencies in what we were taught about our world including the health profession. Imho, we're in the "buyer beware" phase still but because people feel free to share their experiences imho we're headed in the right direction.

    Interesting topic. Thanks. X
     
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  14. A.B.

    A.B. Senior Member

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    Most treatments that are talked about here probably do little if anything on average. We just don't have anything better. The alternative would be to do nothing, which is a reasonable position to take, but so is cautious experimentation.

    I have said this in the past but it's worth repeating: the ultimate goals are a cure and diagnostic test, but this could take a long time. We also need some research into safe, cost-effective treatments that can provide some relief to patients. I find it somewhat disappointing that for example, the value of B12 shots has not been studied as far as I know. There is some anecdotal evidence claims that it helps some patients, it's dirt cheap and nontoxic.

    I find it difficult to blame doctors who are trying to do something useful for their patients. Most doctors have nothing to offer. There is of course always the possibility of snake oil salesmen or simple naivety, but appearances can be deceptive and I've learned that assessing the value of some intervention does take real effort and time.

    One could summarize the situation as: neither doctors nor patients know much if anything, and both must therefore guess, and guesses are likely to be wrong. This is just the current state of affairs, and to change it, we need research.
     
    Last edited: Oct 5, 2014
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  15. JalapenoLuv

    JalapenoLuv

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    Once I sat down and read the naturopathic textbook. It had a good deal of woo mixed in with better chapters on detoxification, etc. While I like that naturopaths are rigorous about supplements the fact that they still teach and use quackery diminishes their credibility.
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Interestingly, JalapenoLuv, there is a big distinction across the Atlantic here. UK doctors are not the slightest bit worried about getting sued unless they are in something like obstetrics or interventional radiology. I am frightened of using drugs off label simply because I have seen people die from the use of even licensed drugs in an approved setting.

    Lots of people are making very interesting points here. My simple point remains that with the welcome advance of empowerment through the net comes a certain degree of responsibility. And to put it simply I think patients maybe should be a bit more frightened too. My wife became insane and nearly died after taking a very ordinary malaria tablet. And even if you can handle it for yourself you don't want to be the one who made the recommendation when someone else comes to grief. What I find most difficult is when people swallow bogus science and repeat it as if it were cast iron fact - just like the CBT therapists in a way. I think Jesus said something about motes in your eye but I was never that good on the bible.
     
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    You are in good company there - know about David Healy?
     
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Oh - I thought you meant someone who studies, or has qualifications in, or works in, the natural sciences - like David Attenborough!
     
  19. JAM

    JAM Jill

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    What parts of their practice do you consider quackery?
     
  20. JAM

    JAM Jill

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    David Attenborough is a naturalist too, not sure about the spiritual part, but definitely a naturalist. The word can be interpreted in many ways. :)
     

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