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Who belongs on a list of the top ME/CFS researchers?

Discussion in 'ME/CFS Doctors' started by PWCalvin, Oct 11, 2012.

  1. xks201

    xks201 Senior Member

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    There are so many to list... a lot of researchers have posted studies on pub med. Specialists in orthostatic intolerance etc. There are a lot of sub categories in this disease...mast cell activation etc.
  2. Leopardtail

    Leopardtail Senior Member

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    A definite ditto to: Peter Behan and Julia Newton
    Titelbaum
    certainly deserves some note being a leading authority and having done some clinical trials.
    I would definitely like to see a good endocrinologist on that list.
  3. Leopardtail

    Leopardtail Senior Member

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    I have used some of the 'home brew' methods in his book and have found them to be highly effective, so would have to disagree with you there, also his fees are (compared to many) relatively low as are his fees for drugs.
  4. Leopardtail

    Leopardtail Senior Member

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    Ditto: Sarah MyHill & Rich Van K.
  5. Stretched

    Stretched

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    No dis intended... . I am re-posting an old post of mine based on personal experience and research early
    on when DrT was involved with clinics to treat CFS...:

    'Please don't put Teitelbaum on any such list. If I saw his name it would make me question the list [new: to the
    point of dismissing it].

    I don't know him and have no personal beef but I have read nearly all his publications AND investigated his 'clinic' in Atlanta, GA. IMO, he belongs somewhere along the lines alternative therapies. True, he's got an MD, but when he started publishing, sic with his book, it was some time after the real researchers had already suffered the pangs of peer review and the ups and downs of publishing real research in very esoteric areas.

    I think he used his basic 'any doc' knowledge and his understanding of the then research state to write a book to give him soft credentials to open a 'for profit' series of clinics with some entrepreneur from Texas. I came close to
    signing up a number of years back when I was more desperate for some doctor to acknowledge my illness. However, after vigorously reviewing the contracts and the setup I thought better, and in retrospect even more so.

    Finally, while he fronts an understanding of then CFS and claims to have had it, again there's no way IMO that
    he could carry on a business and run the celebrity circuit if he "had" CFS as I and others have experienced it.

    I wouldn't even send another PWC to one of his clinics, nor to him unless s/he insisted on some basic health
    guidelines to stay healthy.'

    As an afterthought since that post I would recommend Dr. Byron Hyde who was involved in establishing the
    CCC (Canadian Definition). IMO, he deserves a lot of credit for today's research direction. He has several books out including a text: "The Clinical and Scientific Basis of Myalgic Encephalomyelitis - Chronic Fatigue Syndrome." It's dated but it gave due credit to the pioneers inCFS research, along with his own research and clinical observations. You'll come away from it with a new perspective!

    FWIW, he has a followup paperback 'Missed Diagnosis,' which is circa 2009(?). It's a booster
    for the text but I found it choppy and redundant. The textbook is the one you want - it's the straight skinny, really,~) (It used to be available from his supporters' website www.hfme.org(com). Also, I got a couple copies from various Amazons sellers (new or nearly new for a few$).
    leela likes this.
  6. Leopardtail

    Leopardtail Senior Member

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    I have both books already and round them interesting, like you I found the first book more solid. Thanks for the recommendations though, any more would be appreciated.

    With respect to Titlebaum, I have not attended his clinic but do have a couple of points to make. I don't care whether somebody uses conventional medicine (assuming its above the very low standard of science that seems to be the norm) or herbal medicine or naturopathy. I would rather use the best mix of methods. It's important to realise that conventional medicine is 'shit at cells' and energy metabolism is in cells.

    I implemented (unassisted) only three of his recommendations on getting mitochondria going, they were so effective I had to reduce other medication. It's important too that we remember people DO recover from ME however rarely. I have not qualms with attacking a medics reputation but it must be factual not based on supposition - if we attack former PWCs because their therapy worked and they became well, we cut out own throat.

    One thing to consider with 'alternative medicine' - if you think things are bad in the states there are many countries in which doctors are not just ignorant but forbidden to give PWCs treatments that work by the state. For those people herbal/Orthomolecular medicine are the only forms available since Doctors act as gatekeeper therapies.

    Have you read his clinical trial on Ribose? The experience of my circle of PWCs is that its the single most consistent and rapid 'improver' for the disease.

    If you have had direct personal experience I am more than happy to discuss it in a private conversation (should you wish to). BTW the fatigue centres in the chain are trained by him but sometimes use methods he does not. Look forward to hearing from you.

    I am dong some work on hormones and hormone therapies for PWCs hence anything in that area would be of particular interest.
    Last edited: Jan 12, 2014
  7. Stretched

    Stretched

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    As a pragmatist, I would eat pine ones if I found one single substantiated source that indicated that they had positive efficacy in dealing with M.E. Thus, I'm not at odds with alternative therapies.

    OTOH, I am nearly 30 years into ME and have not as yet learned of anything that stops the cycling and ultimate progression of M.E. - only palliative 'tonics', rxs, and 'brain work." (There are more compelling arguments that M.E. is a variant of Polio. IMU, to date P. (?), M.E. is only preventable and only for an indeterminate time. Please see recent thread re: length of time M.E. around, etc.)

    Re: hormones, no research ref recall but fwiw, despite having ~average TT levels
    I personally did a trial of TT, underarm application for ~ one month for extra energy and verve - nada. It was very $$$. I ended donating the rest of the $8k (90 day) supply for valid med use. In hindsight I found that ~300mg of DHEA (OTC)daily added a bit more zip.
  8. Forbin

    Forbin Forbin

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    There's a kid out of New York who shows a lot of promise... name of Ian Lipkin. :)

    [Actually, Lipkin's interest goes back to at least 1999 with this paper... http://www.ncbi.nlm.nih.gov/pubmed/10568886 ]
    Last edited: Jan 19, 2014
  9. Leopardtail

    Leopardtail Senior Member

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    With a wry smile, I might draw the line at pine cones, but have taken some pretty awful tasting concoctions that made my eyes wince on my way to seeing improvement.

    ME/CFS is very demoralizing but it's important to remember that some people DO recover. It keeps a little hope in life. I have not yet found a 'magic bullet' that cures it but have found ways to lift the curve so my best it better than it used to be and my worst is significantly less nasty (I have put an end to being bed bound at times). I have had it 38 years with some ups and downs though was undiagnosed until last year, hence only recently started to get stuck in to sorting it out.
    It took me a full year of suspending almost all social activity to conserve energy, quite a mix of treatments and massive mental discipline about how I spent (or saved) energy. My personal instinct is that it needs to be dealt with by large multi-disciplinary teams (dominantly biochemical skills) and in an environment (not a hospital) that gives full and genuine rest (like a respite centre). Though the changes of that happening do not seem good.

    Sounds interesting, which thread?

    TT stands for?
    And Jesus wept that was expensive! I am sorry to hear that did not work our for you and it was very kind to donate it. Something would have to be PROVEN before I would (or could) invest that much.

    Is there anything specific that you have found helpful?
    Last edited: Jan 19, 2014
    Radio likes this.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    From a few searches I have found that most of the papers that are positive about d-ribose are by Teitelbaum. He also sells it.

    This thread
    refers to adverse effects (message 14 et seq). There are other threads where people report their positive and negative experiences. So there is not this consistency you speak of.

    Dr Cheney is reported as saying that a third of his patients cannot tolerate it. He used to recommend it but changed his mind. I had horrible effects and had to stop it very quickly. My body felt like it was on fire, and I had a long, drawn-out 'adrenaline rush'.

    Here is some info I put together last year:

    from http://www.ncbi.nlm.nih.gov/pubmed/1904121

    Klin Wochenschr. 1991 Feb 26;69(4):151-5.
    Ribose administration during exercise: effects on substrates and products of energy metabolism in healthy subjects and a patient with myoadenylate deaminase deficiency.
    Gross M, Kormann B, Zöllner N.

    Medizinische Poliklinik, Universität München, FRG.

    Abstract

    Nine healthy men and a patient with myoadenylate deaminase deficiency were exercised on a bicycle ergometer (30 minutes, 125 Watts) with and without oral ribose administration at a dose of 2 g every 5 minutes of exercise. Plasma or serum levels of glucose, free fatty acids, lactate, ammonia and hypoxanthine and the urinary hypoxanthine excretion were determined. After 30 minutes of exercise without ribose intake the healthy subjects showed significant increases in plasma lactate (p less than 0.05), ammonia (p less than 0.01) and hypoxanthine (p less than 0.05) concentrations and a decrease in serum glucose concentration (p less than 0.05). When ribose was administered, the plasma lactate concentration increased significantly higher (p less than 0.05) and the increase in plasma hypoxanthine concentration was no longer significant. The patient showed the same pattern of changes in serum or plasma concentrations with exercise with the exception of hypoxanthine in plasma which increased higher when ribose was administered.

    from http://www.ncbi.nlm.nih.gov/pubmed/1776826

    Ann Nutr Metab. 1991;35(5):297-302.
    Effects of oral ribose on muscle metabolism during bicycle ergometer in AMPD-deficient patients.
    Wagner DR, Gresser U, Zöllner N.

    Medizinische Poliklinik, Universität München, FRG.

    Abstract

    Three patients with AMP deaminase deficiency (AMPD deficiency) performed exercise on a bicycle ergometer with increasing work load without and with administration of ribose (3 g p.o. every 10 min, beginning 1 h before exercise until the end). The patients performed exercise until heart rate was 200 minus age. Maximum capacity was not increased by administration of ribose, but postexertional muscle stiffness and cramps disappeared almost completely in 2 of 3 AMPD-deficient patients. Plasma concentrations of lactate and inosine were increased in AMPD-deficient patients after oral administration of ribose. Our data suggest that ribose may both serve as an energy source and enhance the de novo synthesis of purine nucleotides.

    from http://www.ncbi.nlm.nih.gov/pubmed/11641371

    J Appl Physiol. 2001 Nov;91(5):2275-81.
    No effects of oral ribose supplementation on repeated maximal exercise and de novo ATP resynthesis.
    Eijnde BO, Van Leemputte M, Brouns F, Van Der Vusse GJ, Labarque V, Ramaekers M, Van Schuylenberg R, Verbessem P, Wijnen H, Hespel P.


    Exercise Physiology and Biomechanics Laboratory, Department of Kinesiology, Faculty of Physical Education and Physiotherapy, Katholieke Universiteit Leuven, B-3001 Heverlee, Belgium.

    Abstract

    A double-blind randomized study was performed to evaluate the effect of oral ribose supplementation on repeated maximal exercise and ATP recovery after intermittent maximal muscle contractions. Muscle power output was measured during dynamic knee extensions with the right leg on an isokinetic dynamometer before (pretest) and after (posttest) a 6-day training period in conjunction with ribose (R, 4 doses/day at 4 g/dose, n = 10) or placebo (P, n = 9) intake. The exercise protocol consisted of two bouts (A and B) of maximal contractions, separated by 15 s of rest. Bouts A and B consisted of 15 series of 12 contractions each, separated by a 60-min rest period. During the training period, the subjects performed the same exercise protocol twice per day, with 3-5 h of rest between exercise sessions. Blood samples were collected before and after bouts A and B and 24 h after bout B. Knee-extension power outputs were approximately 10% higher in the posttest than in the pretest but were similar between P and R for all contraction series. The exercise increased blood lactate and plasma ammonia concentrations (P < 0.05), with no significant differences between P and R at any time. After a 6-wk washout period, in a subgroup of subjects (n = 8), needle-biopsy samples were taken from the vastus lateralis before, immediately after, and 24 h after an exercise bout similar to the pretest. ATP and total adenine nucleotide content were decreased by approximately 25 and 20% immediately after and 24 h after exercise in P and R. Oral ribose supplementation with 4-g doses four times a day does not beneficially impact on postexercise muscle ATP recovery and maximal intermittent exercise performance.

    Per http://corvalen.douglaslabs.com/D-R...lucose and Purine Metabolites Int J Nutri.pdf called 'Dose Effects of D-Ribose on Glucose and Purine Metabolites' (not apparently in peer-reviewed journals and poss conflicts of interests detected) d-ribose increase uric acid levels and also increased lactate levels in younger study group (24-30) but not older group (40-50) who had decreased lactate.

    Common to most studies appears to be hypoglycaemia. Some find a spike in insulin production.
  11. Leopardtail

    Leopardtail Senior Member

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    MeSci,

    I have not head time to read all of this material exhaustively yet, though obviously I will - thanks for the links. The hypoglycaemia issue with Ribose is an interesting one and something that has been part of my own research effort. Titelbaum's study also mentions that it occurs only on first administration that was my personal experience (I also have type I diabetes).

    There has been clinical evidence for some time that people with ME have sporadic hypoglycaemia and equally sporadic hyper-insulinaemia. Ribose appears to improve ATP production, and thereby improve Insulin sensitivity (the two are linked on all diseases showing Insulin resistance). In such a circumstance the excess circulating insulin caused by former resistance in muscle tissue would be expected to cause a temporary hypoglycaemia until the excess circulating Insulin has been spent. It would also be expected as such to cause issues if not taken with food. That drop in BM is usually between 4 and 6 mmol/ltr and as such is easy to compensate for. My own Insulin requirement dropped by 20% when I started Ribose - this was a positive thing.

    One can also expect symptoms from immune recovery about 3-6 weeks in and these pass over in about 2-3 weeks leaving many feeling much better. I had an awful 'healing shock' myself but felt much better afterwards showing greater improvement than beforehand.

    I fully understand that ME patients are a diverse group, and that almost no treatment will be universally effective. Only 30% of patients reacting badly is a stunningly good for any treatment that ever has positive effect. Many commercial mediations are considered good if they work for only 20% of patients. I am involved in a large support group for people with ME and my experience to date is that for the vast majority it works well, the failure rate when those 'healing shocks' are taken into account is certainly much much lower than 30%.

    With respect to exercise and healthy individuals, I would not expect Ribose to produce improvement since they should have normal levels of ADP even if the ATP is depleted. For those subjects it would be much like eating sugar. Ribose comes into play when making new ATP/ADP molecules since its metabolically expensive to manufacture endemically. Clearly if one lacks neither ATP nor ADP and has normal ETC/ATP synthase function that benefit would not occur.

    Protocols with ME patients and Ribose (or anything else) need to run long enough for the recovery to occur, these needs to be many weeks/months a flash in the pan will not do it. Bear in mind also that if people implement it in patient that are severely lacking in NADH, CQ10, R5P or P5P, Mg or K then it will take substantially longer to see the benefits unless they are also supplemented.

    There is one obvious group of patients for whom if might be problematic that being those with severe gut Dysbiosis since microbes may use it as an energy source. Even then there are possible ways around that.

    Most doctors sell or dispense whatever they think works. that's to be expected and he markets on a 'not for profit' basis hence that particular attack on credibility was a bit 'below the belt'. One would expect medics to promote stuff they consider works.

    With respect to Douglas Labs, your point did not escape me. Publication however is a marker of nothing with our particular ailment - I wish it was. How many massively flawed papers has the Lancet printed? How many good ones? Ditto the BMJ. When you, alex or I start filtering those papers for medical journals, things may change, but right now who filters? Personally I think we have to properly understand and judge the methodology for ourselves.

    Very large numbers of papers on ME never get published due to numbers of patients (typically thirty if studies are well designed). Given the state of ME funding we are going to have to live with this for quite a while.
    Last edited: Jan 19, 2014
  12. shah78

    shah78 Senior Member

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    st pete , florida
    This question reminds me of a similar one we NewEnglanders would have had in the year 2000. Greatest Red Sox World Series heroes since 1918? The answer: there really weren't any. Some valliant efforts. But in the end. TOTOL LOSERS!!!!! ZEROES!!!! TIME/MONEY/PAPER/EFFORT WASTERS.!!!....... get rid of the neolithic agents of desease(Google Kurt Harris MD), get rid of your Mercury fillings and chelate (Google andy cutler, phd) sit in cold water daily (Google Jack Kruse md), avoid Emfs (Google Jack Kruse md), experiment with B12/folate (Google Freddddddd) and experiment with resistant starch (Google tatertot/Richard Nikoley), practice Tantric sexuality (Google Monak Chia)....... There is no special MAGIC CFS/FM/ME BULLET. Get yourself in as much of an anabolic state as you can (like every one else on earth)however you have to ,and stay there until the day before you die.
    Last edited: Jan 19, 2014
    rosie26 likes this.
  13. rosie26

    rosie26 Senior Member

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    We should have a thread on Improving Anabolic State, treatments and supplement combinations that are helping others.
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Indeed, but I don't know what the 'attack' was that you refer to. I just stated a fact.

    The info I copied and pasted was from a document I made for my own reference, and my notes in it are simply notes of the kind I make when critiquing scientific papers. They draw attention to things that need to be borne in mind, just as - when I have time - I will point out possible flaws in assumptions, methodology, etc. That's all.
  15. Leopardtail

    Leopardtail Senior Member

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    Understood now :)
  16. SOC

    SOC Moderator and Senior Member

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    No, they don't. Respectable doctors recommend products that they consider work and advise their patients to find the product at an outside source that is convenient and cost-effective for the patients. They don't produce and sell, in their office or online, their own brand of readily available products and advise their patients to use their brand. That's a conflict of interest.

    The exception that I accept under some circumstances occurs when the product in question is not readily available or the quality of the readily available product is poor. For example, I accept that Dr Chia's son (a pharmacist) produces and sells Equilibrant, and that Dr Chia recommends it, because medicinal-quality oxymatrine was not available in the US (and may not be still), so they had to produce it on their own. I'd be happier if they weren't making money off it, but I understand the situation in this case.

    Dr Teitlebaum's products are nothing special, imo, so he just makes profit by advising patients to buy his product instead of another equally good, and often cheaper, product. I'd buy into his "not for profit" argument if he is not making a substantial wage from the company (his own) selling the product. I believe he makes a nice living selling his own brand of supplements, so "not for profit" is just weasle-wording the true situation to make him look better than he is.

    I could live with his position better if he did one or the other -- stopped practicing medicine, OR went into business selling his supplements. Doing both creates a conflict of interest I'm very uncomfortable with.
    Kati, rosie26 and Valentijn like this.
  17. Leopardtail

    Leopardtail Senior Member

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    Very few effective ME doctors observe this separation. patients with severe and genuine ME would not cope with locating products at the best price. Then with 'supplements' there is the quality issue to deal with. I make a further comment later on other medics that do similar.
    Look more closely, you will find that the own brand one's are specially formulated for ME patients to account for common issues we have and to avoid the side effects we often experience with conventional medications. Right now I am not aware of any company that formulates things for ME patients. But if you do please supply me a link and I will gladly check out the competition (and the research behind them).
    He formulates quite a few products and has other companies produce them. If you compare prices on his site, you will find they are lower (including products he does not produce) than almost every place else for the majority of them.

    For those of us who do not live in the USA it is impractical and creates great difficulty and tax charges importing from multiple places - I would actually prefer he stock a wider range. Bearing in mind that most ME patients have little energy to locate low cost sources. He treats a lot of patients internationally.

    His royalties are all denoted to ME research - hence the not for profit stands. Have you hard evidence this is untrue?

    Once we get to the stage where most of the items are common place, there is more effective competition and most pharmacies stock what we need, then I would be inclined to agree that separation of doctor and pharmacy would be better. Consider though that in the national health service here, or the hospital there, you get your medical advice and your medications from the same organisations very often. The situation is therefore not that unusual where specialist care as opposed GP service is involved.

    Dismssing a doctor because he makes things easier (and less expensive) for us does not seem like best policy. I do netherless understand the point of view. When the day comes that iHerb stocks everything at similar prices - you and I will be in full agreement.
    Last edited: Jan 19, 2014
  18. Stretched

    Stretched

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    My rebuttal is that IMO it's more likely to be a period of remission - with the 'Roadrunner' not
    far removed,~)

    The above may sound negative but the intent is less loaded - that dealing with what 'it' is might
    be more likely to lead to inner peace while in search of relief than chasing rainbows. But 'it' is only tentative until more evidence is uncovered. Thus, the ongoing pursuit and/or development on knowledge.
  19. Stretched

    Stretched

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    [/quote]

    I feel for you(r) position. How did you deal with your demise for 35+ years?
    OTOW, you don't have to sort back to the beginning - whatever you are find now has been sifted
    for you. Otherwise, plan for overload!

    I have a library of books that needs old Dewey Decimal sorting - many mundane or highly esoteric.
    For example, along the path to now there's everything from 20 years of the CFS journals to the first
    year pharmacy school text(s); other med texts on virology, neurotransmitters, cardiology, et al. I used to lean
    towards the academic stuff but don't profess much erudition.

    There's even a privately published tome by a guy who is now 3 feet tall! He used to be 6'5" before he
    went to Africa in search of a cure for M.E. It seems he told some revered tribal chief there that he didn't believe in witch-doctors ... ,~>

    The referenced thread is current in General Discussion.

    TT = testosterone levels.

    Some supplements are mentioned in this thread & others but it's hard to know which are of most help
    (or synergy).

    As for rxs I fall back to extrapolations from early protocols (a la Cheney, et al). The single most help is Klonopin; then Adderall; then sleep rxs, rotated. All are heavily researched; minimal doses of each; still side effects need balance. At my stage it's a trade-off for better quality of life today rather than following a more 'natural' path for future health. [My current level may average~50% (of what I can recall as premorbid), and vacillates.]

    Oh, and diet: Paleo, and ~ no sugar, and ~no dairy, and of course no alcohol nor smoke. Conflicted protocols? Go figure:~/

    What has kept you going all these years, and what were/are you treating?
  20. SOC

    SOC Moderator and Senior Member

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    To which effective ME doctors are you referring? None of the three (four if you count two in one practice) top ME specialists I've seen ever sold any supplements, much less their own. Nor have I heard that others such as Dr Klimas, Dr Petersen, Dr Kogelnik, or Dr Montoya sell supplements. Perhaps you and I have a different definition of "effective ME doctors". Or maybe it's a difference in acceptable practice in our countries.
    Maybe ProHealth is one to consider?

    I find excellent products (mostly at iherb) that work for both me and my daughter. We've been in nearly every stage of ME from severe to remission.
    I've never had trouble finding low or reasonable cost products online, even when I had severe cognitive dysfunction. YMMV
    Oh really? That's the first time I've heard that, but kudos to him if it's true.

    Nope, I don't. My medical advice and my medications (and supplements) come from entirely separate sources. Always have.
    It has not been my experience that Dr Teitlebaum's website is easier or his costs cheaper than a number of other online supplement retailers. However, I haven't looked at his website in several years, so maybe things have changed.

    If you are happy taking Dr Teitlebaum's advice and buying his products, more power to you. I'm glad you've found a source of medical advice and products that satisfy you. I simply don't think Dr T qualifies as a top ME/CFS researcher (as requested by the OP) or even a top ME specialist physician. He is a peddler of wares. I consider Rich Carson of ProHealth to be the same. They both may provide useful products to our community, but I wouldn't take medical advice from either one.
    Stretched likes this.

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