1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Dr. Mark Hyman - Anybody have a good response?

Discussion in 'General ME/CFS Discussion' started by CateK, Jun 1, 2013.

  1. CateK

    CateK

    Messages:
    18
    Likes:
    10
    upstate New York
    I read some of Dr. Mark Hyman's articles, because he seems to have a thorough understanding of nutrition and its affect on illness. But his latest article has me seeing stars, I'm so angry:

    "Because I once was seriously ill with chronic fatigue syndrome, I know what it’s like to wake up every morning feeling like you can’t go on or to have a thousand and one other minor complaints that lower your capacity to enjoy life.
    Now, of course, with more serious illness, it may take more than one week to find the cause and the cure...."

    Article can be found here:
    http://drhyman.com/blog/2013/05/24/the-one-diet-that-can-cure-most-disease-part-ii/

    I started to write a response, but sounded like an out-of-control raving lunatic :mad: I'll try again tomorrow, after I've calmed down. I don't usually react like this - I think it's because I absolutely did not expect this from him. Sigh. Are there any suggested templates out there for responding to this kind of thing? I hate to let it pass unchallenged.
    ukxmrv likes this.
  2. Kina

    Kina Moderation Team Lead

    Messages:
    5,258
    Likes:
    3,618
    Ontario, Canada
    This article is ridiculous. You are sick because you are fat, toxic and inflamed. I am inflamed but in context of anger.


    This man must be Simon Wessely's personal nutritionist. That's right blame sick people for their bad behaviour and habits. When are people ever going to learn that many illnesses do not result from lifestyle choices. Those people who don't feel well due to poor nutrition can benefit from this kind of thing. And for those who don't feel well due to poor lifestyle choices it takes more than 7 days to put things right because you have to translate poor lifestyle choices into choices to be made for a good long time. For some, it's not even a choice. Many can't affort good wholesome nutritious foods. Many have to work long hours just to earn enough to put any food on their table. Being overweight does not necessarily mean unhealthy.


    How does this sound:

    or



    The best answer to this person other than WTF would be a measured calm response pointing out his erroneous and damaging thinking.

    The whole article just sounds like a bunch of fluff and false promises in order to sell you his diet program and he is using guilt and blame to sell it.
    ahimsa, helen1, ukxmrv and 3 others like this.
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    5,280
    Likes:
    6,233
    USA

    Or playing on the wishful thinking of the incurably ill. What person with any number of incurable illnesses -- HIV, MS, etc -- wouldn't be thrilled beyond belief to find that all they had to do to be cured was a simple diet change?

    PWME are particularly vulnerable because ME/CFS is so misunderstood by both the medical community and the general public that we are consistently told that we would be better if only we tried harder -- to exercise, to eat better, to overcome incorrect thinking. Many of us in the early days fell, however briefly, for that argument. Using that to put money in his pocket is beyond despicable.
    ukxmrv and Kati like this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,577
    Likes:
    5,347
    Albuquerque
    Years ago when I lived somewhere near his practice I checked out his prices--unbelievably high! I don't want to quote his fees from memory cause my memory may be faulty, but even when he was in clinical practice (not sure if he still is) you'd have needed to be wealthy for that one week of testing and diagnosis.

    If you have ever seen him on TV or video you'll get the idea of what he is about.

    Sushi
    ahimsa likes this.
  5. Moxie

    Moxie

    Messages:
    76
    Likes:
    98
    VA
    Utterly ridiculous. Most of us eat more cleanly than the vast majority of the population because we're doing everything we can to take impeccable care of our fragile bodies in hopes of achieving health. And if I had a dollar for every person here who has written about how active and fit and healthy they were when they were stricken down, I'd buy this guy a frikkin clue.
    ahimsa, helen1, Sean and 3 others like this.
  6. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    667
    Australia, Melbourne
    If there was a diet or any cure for ME/cfs you can be sure we would know about it.

    the Perrin osteopathy technique also claims ME cfs is caussed by a spinal defect/misalignment and he says he can cure it ... Show us the money !

    WHere are the studies that prove these claims?
    They should be obliged to produce REAL evidence to support them before theny make them.

    There are so many parasites out there would not even bother trying to correct him CateK SOC.
    ahimsa and Kati like this.
  7. Kina

    Kina Moderation Team Lead

    Messages:
    5,258
    Likes:
    3,618
    Ontario, Canada

    Absolutely. :thumbsup:
    ahimsa, Allyson and Kati like this.
  8. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    667
    Australia, Melbourne

    totally agree too - well said@SOC
  9. AbbyDear

    AbbyDear

    Messages:
    88
    Likes:
    34
    usa
    I have thought many times in the past that if patients get better after simple diet/lifestyle changes that maybe they were not really sick to begin with, or at least not as bad as they thought. We live in a society of judgment and misconceptions. At the same time, there are still many diseases without cure, and many (symptom-base) syndromes without subjective/testable basis (i.e. modern medicine is still clueless). And when things do not make sense, or can not be proved, the old psych card gets played. Well, now (sarcastically) we can add the old psych card is being played for those not getting well after following a given protocol. I have actually felt this with previous experience with many other doctors. They see some improvement in some of their other patients, and they assume it is universal, and they become self-proclaimed all-powerful guru that can fix all problems with their 1 or 2 standard protocols. And if it doesnt work then the patient is seen as not being sick at all, just stuck in their own psych dump, or somehow blame the patient (for not following the protocol exactly). I have had enough of this crap. There are even functional doctors who think that the cause is some simple nutritional deficiency - so they rely on things like the nutrEval and think you just need to supplement those things that are deficient. Well, there is a lot more to it than that. There is absorption, e.g. we know intrinsic factor is needed for b12 absorption. There is genetics, and broken pathways. There are missing enzymes, and probably 1000's of other broken pathways that could happen for various reasons. And then there are immune system reactions, hormone (HPA) systems problems, and neurologic defects, autonomic nervous sytems disregulation, etc. that we really do not have a handle on yet, not to mention the effects chronic infections, some of which are difficult to detect. I get the feeling that some docs even think that even if you tried something in the past, that it (the same thing) will work now only because they are prescribing it.

    The sad thing is I think many doctors (consciously or subconsciously) still believe if things do not improve on their protocol that it is the patient's own fault. And psych people are quick to grab on to this reasoning. I think it is wrong, dis-serving, and hurtful. I think maybe docs are not able to accept defeat/failure, and it's easier to blame the patient. The other conclusion that should be realized is that maybe there really is something seriously wrong. It is just sad that some with a large audience are able to make inappropriate judgments and convince others (partly due to their popularity). It is sad that our society is still brainwashed into thinking (I believe falsely) that ALL unexplained illness is caused by some psych issue (like some event that occurred many years prior to the onset of an illness...), or "chemical imbalance" that is easily fixed with "meds". I have tried so many things, including diets (and "meds") and they do not even come close to even slight improvement to this illness. No one can blame me of not trying. It does get the blood boiling a little when you read about things like this... how wrong some are and how misunderstood (invisible) illness still is today. We work so hard to get well, under terrible conditions, we should be respected for our efforts and fortitude.
  10. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,606
    Likes:
    1,232
    Florida
    Um, thought I'd throw my $ .02 in here. Based on what I'm seeing in person and on the web
    he's right about some people. As fas as I know stats aren't available except within the functional medicine arena.
    Or if you wanted to read all the blogs, etc on the web about this.

    This is why the paleo and gf diet diet are so popular. These aren't fads. Even Bill O reilly is gluten free now.

    Most people I'm seeing who regain their health were gluten intolerant like me. I noticed
    he quoted a story by someone who is gluten intolerant. If you go to a celiac support group meeting
    you'll hear the variety of symptoms, not digestive, these people HAD that went away by going gf. And the ones that
    return if they eat gluten by mistake.

    I suspect that if I'd stopped eating gluten back in 1990 when I first got sick with cfs, I'd have recovered.
    Instead for 15 1/2 years I allowed gluten to continue damaging my brain, guts, thyroid, etc etc. Continuing
    to eat a substance that was already poison to me only made the damage worse. Google theglutenfile.

    I didn't google it but I'd read years ago that he had a problem with mercury and was dx with cfs. I only scanned
    this article but didn't see that here.

    I realize he's probably trying to promote this book here but he's given free info on the web for years.
    Actually many functional doctors have free info on the web. I've seen it since 2005.

    Of couse if you have parasites, bad gut bacteria, nutritional deficiencies, etc these need to be treated.
    He's written about this too. As have countless other functional medical professionals. Most info is free
    on the web.

    Hth .. X
  11. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,606
    Likes:
    1,232
    Florida
    MS societies on the web know about the gluten connection. They've known it since
    at least 2006. Nutrients are important but I suspect that's mostly why dr wahls
    healed so well. Just googling gluten ms you'll find this. Or it's in theglutenfile.

    My white lesions on my brain disappeared post gf diet. So did my ataxia. Tc .. X

    Ps. I'm only up on the gluten angle but I've read that others react violently to other foods or chemicals.
  12. AbbyDear

    AbbyDear

    Messages:
    88
    Likes:
    34
    usa
    good point xchocoholic. i am sorry, i had forgotten all about gluten and other food sensitivities. I guess I was so focused on the response when things like that do not help, or only help limitedly. Thanks for pointing this out, gluten can be a significant problem.
  13. Kina

    Kina Moderation Team Lead

    Messages:
    5,258
    Likes:
    3,618
    Ontario, Canada
    AbbeyDear said:
    Very true. I think if a doctor believes it's the patients fault that they are not improving on a protocol, then the doctor needs to figure out why and address it. This involves the doctor addressing his/her own behaviour. They need to ask themselves 'am I doing anything wrong here, could my diagnosis be wrong, is this protocol actually addressing this patients underlying issues' etc. Then they need to discuss with the patient what they are actually doing in terms of the protocol. Sadly, when a patient says they are following instructions and the protocol is still failing, they believe the patient is still doing something wrong or lying. Rather than to dig deeper and address the failure of the protocol, it's much easier to blame the patient rather than to address their own failures. Is it that hard to admit that what they are doing isn't working and they may not actually know the best treatment for a given patient?

    I am reading a book right now about how doctors think. It begins with an account of a patient who was given a psychiatric diagnosis for 15 years when she actually had celiac disease. She had nasty physical symptoms but was discounted time after time. This was a failure of all the doctors she saw (except the one who finally diagnosed her properly) who prescribed various protocols that failed. When they failed it was her fault, not the doctor's fault. Instead of asking 'why isn't my treatment working, am I wrong', they played the blame game.
    Moxie and Valentijn like this.
  14. CateK

    CateK

    Messages:
    18
    Likes:
    10
    upstate New York
    xchocoholic, I agree that there is something to all this. I started eating paleo with a *heavy* emphasis on veggies in February, and have had noticeable health improvements. I'm currently starting the Wahls protocol, to see if that will help more. No, it hasn't cured my ME/CFS, or even made that much difference in my energy level, but my arthritis pain is way down, my guts are better, my body temp fluctuations are *much* better and I'm slightly more heat tolerant, and I'm losing some weight, which I badly need to do. Probably a combination of better blood sugar control, no gluten, fewer pesticides/herbicides/antibiotics/growth hormones, better gut microbiota, etc.

    Anyway, Dr. Hyman has written some articles that were very helpful to me - combination of readable, yet informative and content-dense, although a bit sensationalistic (http://drhyman.com/blog/2012/02/13/three-hidden-ways-wheat-makes-you-fat/). He seems very knowledgeable about the interaction of nutrition and health. That's why this article crept in under my defenses.

    And I agree, this article is much more of the rah-rah, this will cure *everything*, type of writing. Blecchhh! Makes me very angry, even without his incredibly dismissive comments about CFS.
    Valentijn and xchocoholic like this.
  15. SOC

    SOC Moderator and Senior Member

    Messages:
    5,280
    Likes:
    6,233
    USA
    Maybe I have this wrong, but isn't it true that if you are cured by, say, gluten avoidance, then you didn't actually have me/cfs, but undiagnosed gluten allergy/intolerance? :confused:

    Something is only a "cure" for ME/CFS if it cures most of the patients, right? And we've found nothing that comes even close, as far as I know.

    I'm fairly confident that there are many people with me/cfs diagnoses that actually have some other known, but undiagnosed illness. For all I know, I'm one of them. ;)

    On the other hand, there's no doubt that we all have a lot of problems with multiple body systems and symptomatic treatment can improve our condition to some degree. They're just not cures.
    Allyson, Moxie and ahimsa like this.
  16. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,606
    Likes:
    1,232
    Florida
    Congrats CateK. Healing our bodies can take time. Dr. Hadjivassilou tells his ataxia patients to give it one year on the Gf diet. FWIW. I met someone who's ataxia cleared up within a few months post GF diet but mine took a full year. But it took me over 2 years to really feel the benefits. Even then, my hypoglycemia and OI interfere with having a real life.

    If you haven't already, you may want to have your nutrient levels tested and look for leaky gut / gut dysbiosis.

    SOC,

    At this point, CFS is just a group of symptoms. And since there aren't any specific markers being looked at consistently when diagnosing CFS, there are a lot of PWCS who have something else. OR is CFS just a wastebasket dx ? This makes it convenient for doctors but keeps patients ill for decades.

    IMHO, this article explains this. tc ... x

    http://forums.phoenixrising.me/inde...-overview-of-cfs-and-treatments-for-it.23393/
  17. kday

    kday Senior Member

    Messages:
    260
    Likes:
    48
    Please don't pick on Dr. Hyman. He is not the enemy. And people here may be taking him out of context. He probably intended CFS to be in the "more serious". Of course, it can be easily interpreted the CFS is a less serious illness, but from all the talks and literature I've seen from him, these aren't his beliefs.

    It's also entirely possible that someone has written the article for him.

    But it's not right to cast stones on those who really want to help people. Dr. Hyman does mostly lectures and seminars now, and his clinic is very expensive. But he's not out to get us. Nor did he get better in a week. He had mercury poisoning (hence he was toxic), his immune system wasn't working, and from the pics I've seen he looked more like an AIDS patient than most of us.

    I don't know why people try to attack others that are on our side. I'm not going to name anybody, but I know of a functional medicine doctor that has a lot of success. It's very expensive because you get labs that look at practically everything, so it's a few thousand just for labs. But people do get better with the approach (no, not everyone), and in my opinion, functional medicine is the future of medicine. And as these next generation research technologies become clinically available for the doctor/patient, I think the success rate will be higher.

    xchocoholic likes this.
  18. SOC

    SOC Moderator and Senior Member

    Messages:
    5,280
    Likes:
    6,233
    USA
    He can advertise (and require huge sums of money for) quality of life improvements and I'll let it ride. When he starts talking "cause and cure" then I'm going to criticize. Our best doctors, with plenty of research behind them, don't claim to know the cause or provide a cure.
    Valentijn likes this.
  19. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,606
    Likes:
    1,232
    Florida
    Hi kday,

    I agree with you. Dr. Hyman is one of the good ones. Along with Dr Wahls, etc.

    BTW, I've had a lot / most of those functional tests and Medicare paid for them. I'm very lucky to have a doctor who understands these because I was lost on some.

    FWIW, my integrative doc didn't just run what are considered functional tests (CDSAs, nutritional deficiencies, hormone saliva tests, etc). She looked at my blood glucose and found that I have hyperinsulinemia. She found that I have Hashimoto's despite normal thyroid levels. I'm low on pregnenolone and DHEA. The list goes on and on. :)

    Changing my diet accounts for the majority of my healing tho. tc ... x
  20. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,606
    Likes:
    1,232
    Florida
    Hi SOC,

    The problem is that our best CFS doctors aren't into functional medicine. They're traditionally trained which means that they've been taught how to prescribe drugs. Dr. Wahls and Dr. Hyman explain this. They were both traditional doctors who learned that they weren't prepared to help themselves or their patients heal. They only knew how to keep them on drugs. Both had to get sick to realize this.

    I'd love it if our CFS doctors became functional medicine doctors but so far I haven't seen it. Sure they may read about supplements and recommend them to patients but they're not running the tests functional doctors are and looking for root causes. How many of them run CDSAs ? Look for nutritional deficiencies ?

    tc .. x

See more popular forum discussions.

Share This Page