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HAS ANYONE ONE SEEN /Chronic Fatigue Syndrome: Not Just Tired All The Time! - Dr Alistair Miller ON

Discussion in 'General ME/CFS Discussion' started by shahida, Sep 7, 2015.

  1. shahida

    shahida Senior Member

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    oN YOU TUBE the bit where he talks about the notion that me is purely physical is an 'extreme' and harms patients' is v v annoying. He presents himself as 'so reasonable' - makes me FUME .
     
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  2. Bob

    Bob

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  3. Eeyore

    Eeyore Senior Member

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    What's this guy's background in the ME world?
     
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  4. Cheshire

    Cheshire Senior Member

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  5. Scarecrow

    Scarecrow Revolting Peasant

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    He's the medical advisor to Action for ME.

    His public stance is that ME/CFS is not psychosomatic but he still supports CBT and GET as evidence based therapies. I find it hard to tell what he really thinks. I'd peg him as a fence sitter.
     
  6. Eeyore

    Eeyore Senior Member

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    What is "Action for ME"?

    It might be because I'm American but I haven't heard of it.
     
  7. Eeyore

    Eeyore Senior Member

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    Ok - so this is probably going to make me unpopular, but I just watched his whole video. I found him to sound quite reasonable. I didn't agree 100% with every statement, but the take home for me was:

    1) ME is a real illness
    2) It is medically unexplained, despite certain patterns, and there is no single test
    3) Definitive diagnosis can be made by an informed clinician who knows what to look for, and other diagnoses should be excluded
    4) It has severe effects on the patients and causes real disability
    5) Be open minded
    6) Like any disease, the hard line between psych and physio goes against everything we understand about the human body
    7) It is logical to use psychological approaches to help patients just as it is logical to do so in cases of cancer and RA
    8) Medications offer symptomatic benefit but cannot cure ME
    9) CBT / GET is controversial but may offer benefits
    10) Patients with ME do not respond well to antidepressants, while the depressed patients misdiagnosed as having ME respond quite well
    11) Every new symptom must be evaluated as ME patients can get other illnesses

    I have a hard time really disagreeing with those statements. I find him open minded and I like that he admits the limits of our knowledge. He strikes me as sympathetic and generally wishing to improve the quality of life for his patients. I wish most docs were this good. I've only found a handful that are this sympathetic to us. Most just want to push us out the door.

    I'm grateful for a doctor who will look me in the eye and say, "You have ME. Unfortunately, we don't understand what the cause is and we can't cure it. I can help you manage symptoms and cope, and I recognize this has and will have a severe impact on your life. Some patients find that psychological support for chronic diseases is helpful."

    There's nothing there that is offensive to me. I have a close family member with a very clear medical problem that is generally considered to be uniformly terminal - and at a very early age (34). She does get psych support for her illness. No one claims it can fix the illness, but having a chronic illness evokes secondary depression and anxiety and is injurious to one's psychological health. I think most of us here would agree that we suffer from the problem of not being happy much of the time because we are sick. Well, if we can't fix the sick part yet, might as well try to fix the happy part.

    I live in the US, and here, we don't really see a push for using CBT to cure us of "false illness beliefs." Doctors here mostly just want to get you out of the office as fast as they can because they don't really think they can help you (or don't believe ME is real) - but we also don't have the same problems UK patients have with access to care. I have no gatekeeper - i.e. my PCP does not need to consent for me to see any other doc I choose. If the doc is in network for my PPO, it's covered. Sometimes docs at major medical centers only accept physician referrals, but it's not a money thing, it's that they are busy and only want patients who other docs feel they might be able to help. I think CBT to help with illness coping is a good thing. CBT to cure "false illness beliefs" is offensive - but I didn't see him promoting that. If he does (still?) promote that, then I'd take issue with that.

    I understand the strong desire to disavow any psychological involvement in ME. However, I'll come right out and admit here that since becoming sick, I've often been depressed because of all I have lost in my life. I look at my extremely successful peers and feel inadequate by comparison, and even though I know that the illness is the root of it, I still feel bad about myself. I feel more anxious because I have more unexplained symptoms than my well friends. These are not the cause of my ME, they are a result of it. It should not be something we are embarrassed to admit. It's normal. Cancer patients, RA patients, MS patients, AIDS patients - they all have secondary psych problems. If we deny it, we are saying we don't have that severe an illness. I get that it comes out of the Wesseley assault on our integrity, blaming us and saying everything is in our head, so we feel that denying anything psych is necessary to disprove Wesseley et al. Even he seems to be coming around though...

    If I had to nitpick one problem with his talk, I would have liked for him to mention that while CBT is probably harmless (depending on the content), GET may cause patients harm. However, my ME doc, a very well respected and extremely ME-friendly doc who is frequently mentioned on these forums has mentioned GET to me as a potential therapy. He told me to figure out what I felt good doing that, and then do 75% of that. If I felt worse, stop, recover, and restart at a lower level. If I felt good, slowly increase. He said he thinks it helps some in some patients, but he doesn't think it's a cure or anything close, but it's worth trying.

    I'd rather focus our ire on the really bad docs, the ones who have really hurt us. Dr. Miller does not strike me as such a man. Perhaps there is more to it than I am getting. I only just heard of him and watched a 45 minute talk. He is exhibiting professional, scientific skepticism, which is not a bad thing. He's no Simon Wessely.

    And furthermore, anyone who is criticizing Julia Newton, please don't! She is one of the best researchers out there in ME. She isn't saying our fatigue is like other fatigue - she's asking the question about what fatigue means. She isn't an ME patient, and she doesn't know - so she's trying to use science to answer that question, and I find her intellect, openmindedness, and compassion inspiring. I have absolutely no criticisms of Dr. Newton at all whatsoever.

    Remember, even just getting up and talking about ME, specializing in ME, and saying it's real gets you made fun of and ostracized by your peers. It can be professional suicide. Let's support any and every doc who acknowledges we have a real disease and that something is wrong, and that they, as a profession, have a duty to try to help us. Also keep in mind that these docs are the bridge between us and the rest of the medical community. People like Dr. @Jonathan Edwards sometimes upset people on this forum by pointing out when things are not scientific. This includes things I say or post! I welcome all intellectually honest, scientifically based criticisms. By staying scientific, these doctors can help bring the rest of their profession into the realization that ME is a real and serious and patients are not crazy.

    I for one would like to thank all the doctors out there who go out on a limb for us, who proclaim to the world that ME is real and that it's ruining lives, and that we should use real science to solve it. I would like to thank the kind PCP's who, even though they don't understand us at all, believe us, listen to us, treat us with kindness, and do what they can to help manage symptoms.

    We have enemies out there. Let's not turn our ire on those who are not our enemies.
     
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  8. Scarecrow

    Scarecrow Revolting Peasant

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    Sorry, didn't think.

    It's one of the larger ME/CFS charities in the UK.

    http://www.actionforme.org.uk/
     
  9. Scarecrow

    Scarecrow Revolting Peasant

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    Eeyore, I agree with much of what you've written but I just wanted to comment on this point summarising part of Alistair Miller's talk. No doctor treating cancer or RA would say to their patients "We have this really useful therapy called CBT which some patients have found has helped them to cope with the impact that some of their symptoms have on their lives. Therefore, we won't be offering you radiotherapy / methotrexate. How's that with you?"

    I've spoken up for CBT in the past based on the experience one of my former neighbours had with heart problems when she did one of the early CBT courses but I also recognise that CBT as it pertains to ME/CFS is often a warped version of what this therapy was intended to be. I wouldn't encourage or dissuade someone with ME doing CBT but I'd advise caution and I certainly wouldn't touch it myself. Bear in mind that CBT in the US doesn't have quite the same flavour as the type of CBT that White, Sharpe and Chalder think ME/CFS patients should be doing in the UK.

    There's a huge difference between a disease creating psychological symptoms and psychological phenomena causing disease. Many people are comfortable blurring the line. If anything, it is Alistair Miller's 'reasonableness' that bothers me, which is why I called him a fence sitter. I wish he would just nail his colours to the mast - and I state that as a habitual fence sitter myself!
     
    Last edited: Sep 7, 2015
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  10. Eeyore

    Eeyore Senior Member

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    I agree there has been a push for CBT in the UK that we haven't seen in the US. Part of this is because you have socialized medicine and we do not, so treatments are very much more standardized, whereas in the US doctors can set their own courses to a much greater degree. There isn't really discussion in the US of how all ME patients should be treated (at least not in any way that would be binding) as they're all independent and they don't all report to the same ultimate authority as is the case in the UK. So while I'm sure you could easily find CBT/GET advocates in the USA much like what you have, it's not part of a standardized or nationalized program, and patients can simply ignore it and not go to those docs. Wessely had a huge influence on the quality of care in the UK - much less in the US (but still detrimental). The difference is just the degree of standardization of care.

    I don't think Dr. Miller is suggesting that no other therapies be used. He specifically states that he believes in using medications to help control symptoms and improve quality of life. He specifically states that antidepressants DO NOT WORK and he doesn't use them - in fact he says it's a way to distinguish ME from depression, as his depressed patients that look like ME respond very well to antidepressants.

    He is saying that we don't have really good, rigorously proven therapies for ME yet. This is, sadly, the case. However, I don't mind his saying so. If I were a physician (which I am not), I would certainly treat ME patients (I'd probably be an ME doc given my experiences) - and I would recommend psych for those I believed it could help, and I would do everything possible to control symptoms. I am not so sure I'd be eager to prescribe potentially dangerous therapies with little evidence showing efficacy. If a patient wanted to try valtrex, sure, whatever - it's a pretty benign drug. I don't think it does anything in ME, but it may in some patients, and I don't know everything. However, I wouldn't be prescribing vistide or valcyte unless there were some real objective evidence of viral infection. There is real risk to the patient, and no proven benefit.

    The real difference between ME and, say, RA is that we have very few effective therapies. I do however believe that it's reasonable to try various relatively safe interventions if there is some rationale to do so, even in the absence of rigorous scientific proof. I think the greater problem is that we haven't done the studies to show what works. I think we have drugs that help. It's really hard to know which, and how to identify which patients each would work in. We need more real science and high quality studies to show these things.

    So yeah, I'd probably be somewhat more adventurous in treating patients than Dr. Miller, but that said, if I went to him as a patient, he'd actually be pretty high on the list of doctors if I ranked best to worst. I've met some I think would be better - but I've met a LOT who are much worse.

    I see nothing Dr. Miller says that suggests that he doesn't believe ME is a real, organic illness. I think he is of the opinion Dr. Hyde is - that nothing really helps right now, and so no treatment is appropriate. Dr. Hyde doesn't treat ME. He documents / proves it through rigorous testing and ruling out alternative diagnoses, but he doesn't actually treat it at all. If asked he says there is no treatment at this time for it, and he offers no treatment.

    As an ME patient myself, I can say there have been therapies over the years that have helped me, some dramatically. I do think that these types of treatments should be offered. I think in general very dangerous therapies should require a higher level of evidence for benefit.
     
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  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    These words, they're so easy to say. You can take them to mean something that seems on the face of it soooo reasonable.
    The problem is they are always said by people who are not ill and generally have no one close to them severely or even moderately impacted by this disease.

    SO it seems to them we should all be reasonable and see that psychological approaches are offered even to cancer patients.
    If that's so then why do we continue to whinge and complain.
    I happen to have known someone who works at Sunnybrook in Toronto who is a counsellor working with cancer patients. Her job is to help them cope. Sometimes that means helping them cope with terminal cancer.
    Whatever pretty words get used by the BPS and their followers the upshot of CBT for ME historically is that it produces much better results than patients think and it has a much larger ameliorating effect on the illness than for oh, let's say cancer or RA for example.

    The claims for CBT seem to be much larger for ME. This is for historical reasons I'm now too tired to go through as they are many but it starts with; because it inflates the efficacy of the psych profession. And at a time when things are looking grim for them.
     
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  12. Eeyore

    Eeyore Senior Member

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    Yeah, I know Wessely got involved there and royally screwed things up for all of us, espeically, by far, the UK patients and those under socialized medical systems. That sucks - I know.

    In some terminal cancer patients, all they offer is psych care and pain meds because they can't cure it or even slow it down. It seems reasonable, but clearly reflects a failure of medicine to adequately treat an illness.

    Few would argue that we actually have good treatments for ME. It's one of the most treatment refractory illnesses we know of. There are 2 schools of thought. On one extreme you have Dr. Jay Goldstein - he literally tries hundreds or even thousands of meds in sequence until something works. He doesn't guess randomly but he does try everything before giving up. (He's no longer in practice.) He helped a lot of patients a great deal though. He understood psychoneuropharmacology on a level I have never encountered in any other doc. On the other extreme are the docs who feel they can't help, so they aren't going to waste money and time and potential side effects in an exercise in futility. Miller is closer to this end of the spectrum. I don't think he believes there is no illness or that it shouldn't be treated, but rather that it can't be. He's partly correct.

    Because of the lack of good treatments, CBT got too large a role, and people began to think that if the only thing that works is psych, then the illness is psych, whereas in, say, RA, we know other things work (e.g., ironically, rituximab!) As such, RA must not be pure psych. As treatments become available for us, such as rituximab, CBT will naturally fall in prominence (it already has, and continues to). I guess my point is that I don't think the problem is the CBT as much as the lack of other, better options, which gives CBT a proportionally larger weight.

    There are actually studies suggesting psych therapy can improve survival in cancer. It's a subtle effect, but the mind affects the body, and the body the mind - it's all one system and it's very interconnected - so we should use anything we have right now, but it should be explained honestly to patients that CBT has only modest effects and the illness remains intractable and refractory to treatment. Patients shouldn't be forced into that option, it should only be offered, and it should be done in a way that makes it clear that the illness is not just a psych illness, and that the CBT is not about making a patient believe he/she does not have ME.

    Again some of the differences here are regional. I've had docs suggest I see a psych. The psych did a detailed eval and decided I had a physical illness and secondary depression and anxiety that derive from it. She also said that when we can treat ME, my psych problems will likely disappear with it. She still said therapy might be helpful. I've tried it and didn't find it helpful, and stopped it. Antidepressants don't help - everything I've tried has made me worse - especially even low dose tricyclics. My PCP doesn't push psych AT ALL, you actually have to push her for psych if you want it and even then she is quite hesitant.
     
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  13. Eeyore

    Eeyore Senior Member

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    Oh - my former PCP used to push the "you should go out and have fun more" line. Yet I still liked him, and found him to be a compassionate and intelligent doc, even if that line irritated me. I think he told me once I'd be better off stranded on a tropical island or something.

    However, when I came to him with an idea, a concern, or a request for testing or treatment, he listened, was open, thought it was interesting, and helped. I always appreciated that. I think the problem is that ME isn't taught correctly to the medical profession, and they don't understand why we are disabled, in part because it's really hard to explain it.

    I was in this position recently with my PCP, whom I really like (current PCP) - and she was trying to nail down what symptoms were debilitating. I realized it's quite difficult to put into words sometimes. Part of it, I think, is that we've been ill so long we don't really know what it feels like to be normal anymore - we've completely forgotten - so we don't notice the differences anymore. We just know we feel lousy and don't want to do much as a result.

    We should really think about how to communicate this better to doctors. Maybe you're better at it than I, but really am not good at it. I'm so used to the "norm" being crappy that I don't notice the contrast between that and being healthy - but it's there, and it limits me, and makes me unable to do stuff.

    After a few decades you forget what it's like to feel well.
     
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  14. Snowdrop

    Snowdrop Rebel without a biscuit

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    What is that indicating though (improved survival). That some cancer patients have a more robust physical ability to deal with cancer?
    Or better social support of family and friends or perhaps more money to deal with ADL (activities of daily life) allowing them less stress and more rest?
    Or they perhaps went into the programme with better mental coping strategies. How does one separate that out in a study?
    Or did they just talk themselves into a better frame of mind without any of the wide variety of variables in life having any effect or meaning?
     
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  15. Snowdrop

    Snowdrop Rebel without a biscuit

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    Expecting too much from a PCP is a problem to be sure. As someone in Ontario I realise my Dr's limitations are often imposed one's and I have said so elsewhere.

    Lucky for you you are male and have degrees in the sciences. this goes a long way to being believed. I'm not saying that your Dr would certainly treat women without science degrees different but you might be surprised to find that this attitude would not be out of the question.
    My husband and I have shared Dr's over the years (we've had a few through moving from place to place). they have all been decent compassionate people. But when we compare notes as regards treatment it's been quite illuminating--not for me but for my husband.
     
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  16. Eeyore

    Eeyore Senior Member

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    No one really knows - but I believe in a mind body connection. Not in a new-agey way. I'm a scientist. However, I think Dr. Herbert Benson's research is extremely well documented and well replicated, and I think his conclusions are almost unassailable. He's not even talking about CBT - his work was on the relaxation response, and he showed that meditation can help with a wide array of illnesses, and for optimal treatment, should be combined with medical and surgical interventions. Different mental states have biochemical effects on our body. Stress can make anyone less healthy. Treatments that ME patients use sometimes (e.g. LDN) are entirely based on making the brain make endogenous chemicals that will improve health.

    None of this means that there isn't a physiological basis for ME. Of course there is. I have lived with it for decades, and it has had a devastating effect on my life and my family. It just means that like all humans, psych can affect physical, and in fact mind-body dualism is scientifically untenable.
     
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  17. Eeyore

    Eeyore Senior Member

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    The science may help, and yes, I do think consciously about how to frame questions and I converse with doctors in their own language, and they do respect my respect for hard science.

    That said, I don't know if being male makes nearly as much difference as you think. I've had some of the worst doc experiences you can imagine - things so bad I would not even write them down. I've found great docs, but not without a lot of effort. I too am always afraid to see a new doctor, for fear that they'll be one of the bad ones. More often than not, docs don't believe in ME with me either. Some think I'm crazy, some think something is wrong but have no idea what. Most aren't interested in helping me. The docs I continue to see are the rare ones that seem to actually care and want to help. I never ask a doctor to do anything unscientific though.

    I've found that I need to do my own research and formulate my own theories. If a test result is abnormal, I need to be the one to push the followup. It's not that the docs don't care, they just don't know how to interpret things, because we don't look like other patients. However, propose a good theory based on hard science with actual references to primary peer reviewed literature, and propose a way to test that theory, and they might be interested. The bad ones - forget it. Most are hopeless for us. Some are downright horrible to us.

    I have real issues with how I've been treated by the medical profession - don't think for a second that being a man gets you out of it at all. It doesn't. Science can help - sometimes - but not always. Science helps more with the smarter docs who understand that there is so much that they don't understand. Flow-chart style docs are hopeless and there is no point in continuing with them.
     
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  18. Esther12

    Esther12 Senior Member

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    I thought most people now thought that the way in which some claimed CBT should be routinely used to help cancer patients was just quackery. It had been claimed that CBT and other psychological interventions could affect life-span (with vague allusions to the mind-body connection, neurology, hormones and the immune system) but that now seems to have been given up on. CBT for cancer related fatigue looked like BS from the studies I read.
     
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  19. SOC

    SOC

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    That's what I remember reading as well. The research on which the conclusion that CBT extended life with cancer had the usual flaws of psychological research. More rigorous statistical studies did not support the conclusion that psychological intervention increased lifespan in serious illnesses.
     
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  20. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    hmmm...I think CBT / other positive thinking interventions helping with Cancer outcomes has been pretty well debunked.
    I know James Coyne takes a particular interest in picking apart these studies, here are a few of his academic papers linked from his writings on this topic:

    https://dl.dropboxusercontent.com/u/23608059/psychotherapy does not promote survival 07.pdf
    https://dl.dropboxusercontent.com/u/23608059/thinking does not nake it so 2010.pdf
    https://dl.dropboxusercontent.com/u/23608059/psych bull 07.pdf

    and a quote :
    (bolding mine)
    from:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2858800/
     
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