The last blog on Dr. Teitelbaum showed that some people love him and others really, really don’t. He’s a different breed from the Klimas’s, the Lapp’s, the Bateman’s and the other ME/CFS experts many of us are most familiar with.
1,000 new Fibromyalgia and ME/CFS practitioners – what do you think?
He doesn’t do CFSAC and doesn’t seem to have participated in the IACFS/ME; instead he writes books and gets on mainstream media. His book “From Fatigued to Fantastic” sounds like fluff but is a very comprehensive treatment guide to ME/CFS and FM treatment. He has very high fees but he also provides a free electronic survey that can help you pinpoint possible issues (and use his supplements to fix them). He’s an interesting blend of physician and marketer.
Now he’s creating an ME/CFS and FM doctor network that could fulfill a big need – and make him some money at the same time. The network aims to
- educate a 1,000 practitioners of all sorts about how to treat these confusing illnesses
- provide a social networking hub they can swap ideas on
- do research studies using alternative treatments
Along the way he’s going to provide
- the opportunity for the practitioners to enroll in an 8-hour $695 course on his SHINE protocol
- the opportunity to buy supplements through a portal on his site
- a doctors referral list
PAN hopes to bring together traditional and alternative approaches to treating ME/CFS
You could see this FM and ME/CFS practitioner network as nothing other than a clever way to make money by selling the online SHINE course and supplements. You could also see it as a real opportunity to educate doctors and expand treatment options for two very misunderstood disorders.
I think the network will, if it works, fulfill a big need. I think nutritionists should be talking to MD’s. I think naturopaths have a place in the treatment of these disorders for some people. I don’t think the SHINE protocol is the answer but I know it treats ME/CFS very seriously and it’s light-years ahead of what most doctors know about these disorders. Basically I love the idea of an ME/CFS and FM physician network.
But that’s me.
Let us know what you think. Is spreading the SHINE protocol a good thing? Would you want your doctor to be in a group of diverse practitioners? Would you ask your doctor to take the SHINE course?
Dr. Teitelbaum believes that traditional medicine now only provides about 15% of what’s useful in treating ME/CFS and FM while alternative medicine (nutrition, chiropractic, etc. provides about 85%. Do you think think that’s true?
Take the poll below or leave your comments and let us know.
From Dr. Teitelbaum
Dear Readers,
Sometimes it seems to me that health practitioners in different fields are very much like clerics in the various religions — they usually don’t talk to one another! Hindu Brahmins don’t talk to Jewish rabbis who don’t talk to Muslim Mullahs who don’t talk to Christian priests. And I mean really talk — a conversation of cooperation and mutual respect, aimed at learning from each other. Likewise, in the area of health, medical doctors don’t talk to chiropractors who don’t talk to naturopaths, and on and on. When they do get together, they talk about anything but health and healing.
The result is that no one group really knows what the other groups are doing to diagnose, treat and heal disease. And therefore healing options are limited, with people who need help continuing to suffer.
Well, I’ve spent the past year creating a new organization to change all that — the Practitioners Alliance NetworkSM, or PAN. PAN is a network of health practitioners from widely diverse backgrounds who get together to teach and learn. Members share their ideas through an online social platform — a virtual meeting place not unlike Facebook — and by doing so gain insights on alternative ways to improve care for a broad range of health conditions.
So how does building such a community lead to more CFS/FMS trained practitioners? Because in addition to the many benefits practitioners receive by joining PAN, I’ve created special online training that members can take to give them expertise in treating CFS and fibromyalgia. I am also available to answer practitioner questions and mentor them on how to better help people. Our goal? To create a worldwide network of 500-1,000 well-trained CFS/FMS practitioners by 2017!
Over 250 practitioners have already become PAN members, and we’re growing quickly. Part of our mission is to conduct research studies. Our first, which we’re starting this week, will be to combine treatment approaches from multiple diverse healthcare disciplines to treat Alzheimer’s and dementia. Do you know someone with these conditions who might be interested in being a participating subject? My bet is they can improve considerably, and being in the study is a good way for them to get what will likely be about $5,000 in free care as well (call (410) 573-5389 for more information)!
Here’s what you need to know about PAN, and how it can help benefit your care — and your cure!
What Medical Doctors Really Know (Not As Much as They Think They Do!)
When I graduated medical school (back in the Jurassic Period, when men in white coats ruled the earth, or at least the universities and hospitals), I thought that MDs knew 95% of what could help people who were ill, and that the other 5% was a mix of vitamins, herbs and other cute “secondary” techniques. Now I know better. Way better.
My impression now? Standard MD-type medicine comprises about 15% of what is useful. The other 85% of preventive and curative wisdom resides with non-holistic MD practitioners, like naturopaths, chiropractors, nutritionists, herbalists, homeopaths, energy workers, structural therapists, and acupuncturists.
PAN is about having access to 100 percent of the world’s healing wisdom. Instead of having only two tools in the toolkit — the drugs and scalpels of MDs — PAN practitioners will have hundreds of tools. In fact, they’ll be the first group of practitioners who actually talk to one another, developing and using healing options outside their otherwise limited areas of training and expertise.
Those doctors can also refer their patients to a practitioner who might have a better, more successful approach to treatment. For instance, an MD might refer a patient with back pain to a chiropractor. That’s a huge difference from common medical practice, where MDs typically don’t refer their patients to a non-MD practitioner — because they’re afraid of being seen as a quack.
The Holistic Hologram
One way to think about PAN is that it’s a kind of hologram of medicine. Let me explain…
A hologram is a 3-D image suspended in space. If you smash the holographic plate that projects the image, every single piece can still project the entire image. Only the image won’t be very clear. The more pieces you add back, the clearer the image you see. In the same way, PAN provides the clearest image of healing for the best treatment outcome. Because it includes all the pieces!
Another way to think of PAN is that it’s like a Facebook page for health practitioners. A place where they can come together to share what they know, learn from others, and use others as resources. I’m also on the page, so I can answer practitioner questions, and mentor those who are just starting to develop their integrative skills. (By “integrative,” I mean medicine that uses the best of all options, whether it’s drugs and surgery, or vitamins and massage.) Right now, we have over 250 practitioners in PAN — and the number is increasing daily!
Click here to learn more about PAN, including how to invite your health practitioner to join for free.
1,000 New Fibromyalgia Practitioners, and How You Can Help
But what about those 1,000 new fibromyalgia practitioners? Well, as part of PAN, I’m offering an 8-hour online workshop to make practitioners experts in treating CFS/FMS, using the S.H.I.N.E. protocol (Sleep, Hormones, Infections, Nutritional supplements, Exercise). Practitioners can take the course at their own pace, and the cost is $695.
If you have CFS/FMS, please consider letting your primary healthcare provider know about the course. In fact, you can give them a special discount code, “patient2practitioner450,” that will get them a $245 discount off the course for a net price of $450. This way, you can guarantee that your practitioner is providing you with the best care. We think you’re worth it! (Please note this code will expire August 15, 2014.)
Another advantage of this new initiative is that we’re using the graduates of the CFS/FMS online course to build an all-new list of qualified CFS/FMS practitioners, so that everybody with the condition can find a top-notch practitioner nearby. Our goal is to get 1,000 well-trained CFS/FMS practitioners by 2017. Let’s do it — together!
The Networking 'Vitality' Poll
(Health Rising is not affiliated with or receive any funding from PAN or Dr. Teitelbaum. )
Dr. Teitelbaum is a dangerous clinician. I am a former patient. His gunshot approach is not scientific. He has had many people suffer from treatments like cortef and Thyroid medicines.
He also made the comment on Dr. Oz tv show that CFS was a quite easy condition to treat.
Irresponsible at best.
For me, he jumped into the game just too early on claiming he could really help people when nothing was still known about this illness. I felt his motives were very suspicious. I wonder how much he has profited from the misery that CFS causes to its victims. Please everyone, don’t slam me just because I have this opinion. Doesn’t mean I’m depressed.
I
Why does he use cyanocobalamin in his supplements when that’s not the type of B-12 we need?
I don’t believe you can generalise like this Angela.
‘We need’ implies that everyone is the same. I sincerely believe everyone in this world is unique and has differing needs depending on their genes, lifestyle, symptoms, diagnosis and prognosis. There may be some/many patients who do well on cyanocobalamin…..others may require a different form of B12.
First things first.
One needs to get a correct diagnosis. So many health conditions have similar symptoms.
I am NOT generalizing. I believe no one needs the form of B 12 in cyanocobalomin as it is synthetic form made in a lab. There are other form(s) plural which are better recognized by the body. Same goes with folic acid. These details matter.
Dr. Teitelbaum, we hope, would also be one of the clinicians learning new and better ways of healing and treating NID/ME from his peers, including altering his own program as needed by the individual clients, many of whom have become their own best practitioners.
Until now, no one else has stepped forward to bring practitioners together to support cross-spectrum NID recovery; the conflicts of interest in allopathic conventional modern medicine (“traditional” medicine is acupuncture, for one example) have not been in the interest of patients. There is strength in numbers here; networking can be effective and more affordable in the long run. When the pharma companies are making mega-billions with side-effect medicine that has run families into stressful poverty circles for forty years or more, who cares if this one experiment makes him money? Our skeptical community will keep an eye on the project.
The lack of cooperation among conventional and integrative practitioners in general, and the culture that supports this divisiveness, has cost patients decades of their lives, billions of dollars in GNP and incalculable suffering for patients and families/caregivers alike. Often, people who break old harmful paradigms (for example, Mandela and Tutu in South African apartheid recovery) often seem sketchy, offputting and scary to those who cling to the old unsustainable ways. Some people say they are running out of time with the corporatism of “modern” medicine. Time to do something new by bringing the best approaches together in mutual cooperation; no more years to waste from long-ineffective, bureaucratic approaches to the broad spectrum of NID conditions.
Well said!
The void that traditional medicine has failed to fill is being filled by alternative practitioners. Do their treatments work? Are any of their treatments harmful? No one knows because they are not being scientifically measured or followed.
The PAN program may interest physicians in at least trying to help. It may also appeal to them as a new revenue source if they are selling Dr. T’s suppliments. If they don’t see positive results or profits they are likely to return to dumping patients into psychotherapy. At least then they won’t feel obligated to listen, knowing they can’t do anything to help and won’t be paid for their extra time.
I suspect that the overwhelming majority of the 250 PAN members are alternative practitioners looking for legitimacy and paying customers.
I am generally opposed to snake oil, but in this case, what else is there? It’s just another thing to try, though I’d have to have run through every other scientifically plausible approach before ever resorting to the black hole of herbs.
I felt like that when I was young and foolish. As I met more doctors I learnt more about the limitations on what they can do and how little they listen – to their patients or to others, especially nutritionists.
I’ve gone from being housebound and virtually bedbound to getting out and doing things. Still have energy issues but I’m working on that. Got there by refusing CBT and GET and using nutrition and trial and error on supplements.
I worry that this guy will sell his approach so hard that this becomes the only way and that the supplements chosen may not be right for everyone but actually it does seem likely to benefit quite a few people who currently are only offered the sort of treatments offered to me.
so far my docs do not give a rats ass what this doc or any others have to say so unless they are willing to work with CFIDS/fibro docs then it us useless, costly and dangerous. Most are selling vitamins anyway or not accepting insurance and GP’s,etc resent that. I could set up a practice and give out advise after all these years of suffering from CFIDS and changing the names of this to ME doesn’t help anything. Hate to sound bitter so forgive me but I am not getting better and I have been to alot of docs. The Cleveland Clinic has been the only place that has found anything and treated it.
‘Would like to know what CC tried to treat. In years past they were zeros like everyone else, but I’ve heard there have been some acceptance and progress. Did they mainly tackle the POTS angle?
Quack.
I applaud the efforts that Dr. Teitelbaum is making. His efforts to publicize this disease are helpful for us all. He is more media oriented than most doctors and we can use him to help us this regard. It is true that he is benefiting financially but if his efforts help us all then I am ok with this. The suggestions in his book have helped me more than any other single source by far so I hope he did profit from it so he can continue to help us and will be motivated to do so.
Personally, I agree that he overstates the success of his protocol, but it does indeed help and most doctors I have met inflate the successfulness of their personal approaches.
We have far too few willing to help us. Let’s keep our critical eye on him but encourage him to keep trying.
Dr. Teitelbaum’s SHINE protocol (implemented under another physician’s care) made a significant difference in my 25 year battle with CFS. His book From Fatigued to Fantastic is a reference that I continue to use and I feel as if he’s one of the few physicians who really understand what’s going on with my body.
I applaud his efforts to educate other physicians. Most have no idea what to make of it when I tell them I have CFS/ME and none have any idea how to treat it. My chiropractor is the only doctor remotely familiar with the issue of CFS.
Dr. Teitelbaum may be a good marketer but he’s got the knowledge, research and true desire to help CFS sufferers.
I really don’t see this as a break through went to a Teitlebaum devotee Doctor when my fibromyalgia began to get out of control. Spent well over $2000 initially on bizarro test insurance wouldn’t cover. Bought expensive vitamins. Took some by shots. Went to the doctor monthly. He did nothing but fleece me. I up for training new Doctors looking at immunological problems, not diagnosing every chronic pain as fibromyalgia. I have most symptoms for years before the network even says it’s a new fibromyalgia symptom. When did mine start, I was never hardly sick in my life till 11 months after I was diagnosed with cervical cancer due to HPV in 1990. In 1993, they had a label, fibromyalgia. I am now disabled with almost every fibromyalgia symptom plus kidney failure unknown cause, thyroid ate up with nodules, unknown cause, IC, unknown cause, intact I only test positive for inflammation in my body of unknown origin
I am uncomfortable with this approach of teaching a program (his) for $$, and then developing a network of practitioners out of it. It seems more like a marketing ploy to make money. As a medical practitioner I would look for reputable universities & research centers or institutions that are offering medical education on the subject – with several researchers & clinicians in the field presenting information. So, no, I would definitely not recommend this to my physician. There is a decided conflict of interest when the organizer/presenter of the treatment approach stands to gain financially from this approach being adopted.
Also, what is it that is being taught about ME/CFS in 8 hrs? What is needed is an understanding of the illness & a review of different treatment approaches (the most successful according to patients is pacing) so that doc or who ever can take that education with them, and build on it, become excited about the mystery and complexity of the disease, etc. not have a set prescription (SHINE) advocated by one physician.
SHINE is only going to take you so far. If you have “chronic fatigue” maybe it will help a little. It won’t fix M.E. Fatigued to fantastic NOT! (And no, I didn’t read the article)
I simply will NEVER trust people of any profession whose goal is make themselves rich based on the suffering of others. This doctor’s high fees eliminate any trust or interest I would have in him. Find me a medical professional who wants to make a decent income by truly helping others, and I’m ready to listen.
Regardless of who Dr Teitelbaum is, what experience or success he claims, I think the most crucial thing is to get orthodox medical practitioners and alternative practitioners interacting and understanding each other’s treatment, working together and where necessary, referring patients to the appropriate practitioner at that particular point in their wellness journey.
There are many conditions that can be treated with safe alternative treatments, but that is not to say a patient can’t be allergic to a supposedly safe herb or overdose on a vitamin supplement. Just like if you broke your leg, you would go to a hospital (not a herbalist), although a herbalist or naturapath may be helpful in supporting your recovery from that broken leg with healing herbs and/or vitamin supplements). In turn, there may be further investigation needed. For example, did you break the leg because you were dizzy and fell off the ladder, which might lead to a further investigation of nerve problems or inner ear infection (or even something more serious causing loss of balance like MS or brain tumour
).
So why and how did one get ME/CFS/FM in the first place? Wouldn’t we all like to know this?
Unless we can open the channels of communication and sharing of knowledge, there will always remain isolated pockets of health practitioners practicing isolated and minimally tested treatments.
So…….Dr T. may be out to make money. Who isn’t. I’m not interested in whether the SHINE protocol works or doesn’t, personally. It may work for some. I would like to think that at least it didn’t make someone worse.
That’s not the point. The point is communication and willingness to share each other’s knowledge. There has to be a willingness to acknowledge that none of us, patients, doctors or scientists can possibly know everything.
The starting point to all Healing is accurate diagnosis and a willingness to spend time achieving this. And considering that many of us patients have limited (or no) finances, there needs to be Government support (or co-payments if you have private health insurance) in paying for this. The Government needs to allocate funds for research and trials. There has to be money expended for Doctor’s time and medical tests to make an accurate diagnosis. Half of it may be in the genes. Does your doctor or alternative practitioner ask about your family history?
In turn, the patient needs to take responsibility for his healthcare (or in the case of housebound or bedridden patients…..a family member, trusted friend or advocate). He/she needs to educate him/herself on a complicated condition with many symptoms (where possible).
Like ripples on a lake, there is an ever widening connection of issues that need to be addressed from pollution. toxic chemicals, workplace conditions, stress & so on. The very way we live has an affect on health and wellbeing. And ME/CFS/FM (and I generalise with this abbreviation as it’s just easier to type).
So in investigating serious and debilitating health conditions which have multifaceted symptoms, we need to start at the bottom and work up.
And those who pay $695 to Dr T. need to have an open mind. Dr T. won’t have all the answers because he quite simply has limited knowledge and success rate. He has a limited number of patients…….. and considering the massive number of the population worldwide who are succumbing to these complicated health conditions/syndromes, he can’t possibly claim 100% cure.
My own health is a fine balance of diet (dairy/grain free), supplements (which I can afford on a Disability pension), slow regular walking (which happens to be what works for me), minimal stress, open & positive mind, pacing, fresh unpolluted air and keeping well hydrated with fresh water. I have access to prescription analgesics (but take them rarely these days……only when pain and/or inflammation stops me in my daily activity……and even then, sometimes a tweak to the diet can work just as well), take the appropriate prescribed drugs necessary for my two more serious conditions (which are genetically inherited), keep away from crowds or anything which increases my MCS and generally treat myself (being in tune with my body as I am).
Is Dr T. really any different to all the other ‘specialists’ who charge a fortune for their services?
There is a problem with someone possibly selling mis-information and gaining large amounts of money and publicity on the back of it. It’s bad for the reputation, recognition and acceptance of ME/CFS in the scientific world which is what we need above all else.
We definitely need communication among doctors and medical providers. This illness is simply too complex and little recognized.
Dr. Teitelbaums treatment is not a cure. But none of the other experts have a cure either.
They are simply trying very hard to figure out what is going on in our bodies, and find some
Things that bring some relief.
Certainly, some of the treatments tried by all these doctors can have dangerous side effects in some patients. We all respond differently.
I, for one, am very thankful that Dr Teitelbaum uses TV, radio and other media to help
Make this illness more accepted and recognized. This lack of acceptance and recognition (even among medical providers) is one of our major problems in getting research funds and social support.
I personally have not found supplements and natural treatments particularly helpful, (I have a closet full and it’s very expensive) but I have to think doctors etc. communicating together is worth a try and might bring about some good things for patients.
I agree! I usually try Swanson supplements because my doctor recommended them as cheap and of pretty consistent quality. But a friend told me that there is a company she orders from that offers a year refund if you’re not satisfied… I forget if it’s Nature Made, or what company unfortunately – but maybe if you do a search. So even if you’ve opened it and had a few, and then you realize it’s no good for you, they’ll refund your money! Pretty good deal I think, especially for our patient population! I don’t know how good their quality is though, or if their prices are high if you keep things.
I find that supplements work very well if I take them consistently and am patient to see results in 2-3 months, not overnight. BUT, I can only take so many pills. Food and sublingual drops are far more effective because they are generally better absorbed (but we have a problem with absorption usually so we need extra amounts over what other people need), so I try to get anything I can in an edible form, and only use the pills when absolutely necessary. Too many pills make me vomit. That has worked well for me, especially in regard to vitamins and things one can find naturally in food. The other stuff, I have a limit for how many I try at a time because I have a very limited budget and also a sensitive stomach. It has to be significant improvement for me to continue with it after 4-6 months. I found B1 in at least 1500mg/day, magnesium glycinate, and CoQ10/ubiquinol to be among those that were worth taking in pill form long-term, for instance. The D-ribose that Teitelbaum suggests did work for me, but not significantly enough to justify the high cost. It’s a lot of trial and error to find the right combination. Good sleep does more than anything, and I will do almost anything to get it.
I agree with those saying “no” to this thinly veiled ploy to attain money and credibility. The man does not have all the answers. I have read all his books and suffered setbacks during a big dust-up at a chain of clinics he inspired. To claim that 8 hours of training will create “experts” is deceptive and harmful. My integrative medicine physician has spent years, not hours, trying to decode ME/CFS/fibromyalgia and is helping many though he does not claim to have cracked the code. Frankly, I find it disturbing to have people “trained” to think they have.
True. I am too tired to type my own opinion, but you put it well.
I don’t care for the handle PAN either :O
unfortunately this man is more about money than healing fibro.
a friend of mine spent about $5000 in a years time without any positive
results. if he head the answers do you not think it would not be OUT and would be on the news and medical journals. please be logical before you give this many ANY of your hard earned money. he sings a very good tune as he takes your money
I spent far less than that (maybe $200? – none of which went to Teitelbaum except the cost of the book) and had some good results. I’m not cured, but I feel better. We as patients have to take responsibility for our decisions too – how can anyone track progress in $5000 of supplements in a year? You’d have to try new things every day, never knowing which worked or made you worse! Changes should only be made once every 3 months, or one month at the fastest. Besides, you don’t have to give him a penny. Order his book out of a library. Try a few things in it that you think fit you. If that includes supplements, buy them from a company you trust – I get most of mine from Swanson’s because my doctor recommended them to me as pretty consistent quality and cheap. See your own specialist to follow up with. Nothing has to go to Teitelbaum at all – but he still gives a comprehensive list of good ideas to try for Sleep, Hormonal support, Infections, and Nutrition, which are in fact helpful. His protocol does not require that anything you try be bought from him. And you can go at your own pace, within your own budget. Nobody makes us empty our wallets, we have to be patient and go slowly – no one has found a cure yet, just treatments to ease our symptoms. And I’ll take anything that makes life more livable!
The allopath who first Dxed me (“just like the Tahoe victims”) tried Valtrex. On HMO coverage, I got spooked at paying $400 a bottle, especially when we hit nothing. So I read Fatigued to Fantastic and went on a total departure than nearly bankrupted me.
Not everything in Dr. T’s book is bad or useless. But overall it misleads as to the true severity of the disease, while “alternative” practitioners often takes advantage of allopathic knowledge gaps to suggest that you can solve all your own health problems. Once on BCBS, I tried several integrative M.D.s., including a couple of Dr. T clones. One claimed I’d return to work full-time; another was befuddled that I was deteriorating before his eyes, and blamed my childhood and life stresses. What I really needed was a SPECT for disability. By the time I got it, I was down to to 17% of my former bank account and a whisker from moving in with my mother.
The better integrative M.Ds. out there, I think, try to learn from the more scientific types, and make it plain that they don’t have any more blueprint solutions than anyone else yet.
As the caregiver/mother to a young adult ME patient, part of my “job” is to research every available treatment and protocol. I look to ME writers/bloggers like Cort, Erica Verrillo and Maija Haavisto who HAVE researched and examined lots of possibilities to narrow down the field a bit. Erica Verrillo’s book considers a lot of proposed alternative therapies and nutritional supplements and I’ve read her examination of those options with a great deal of interest.
There is no question that nutrition is an issue for ME patients–whether it is because your absorption/digestion isn’t working as it should due to HPA axis issues or stress or deconditioning or whatever the reason. The fact that Ian Lipkin is focusing on the microbiome in his crowd-funding appeal should be a cue that the gut is worth paying attention to. Nutrition is something that any ME patient can look at and thoughtfully consider the options available. For this reason alone, love him or hate him, Teitelbaum has a point. I may not agree with his whole list of herbs and supplements, but it got us thinking when we started looking at my daughter’s nutrition.
What I’ve learned as I have floated on the fringes of the online ME community, reading comments and forums with great interest, is that a huge percentage of ME patients don’t have the financial resources, insurance or health to get the medical support they probably need. It doesn’t matter what country you’re in, trying to access the resources to stay stable–never mind, go into remission–is challenging. Some patients who could afford a visit to an ME/CFS specialist like Klimas may not have the physical strength to travel to her clinic. There are also the real conflicts between specialist medical practitioners or clinics (like Mayo) where one might understand and treat OI/POTS/NMH, but believe CFS/ME is a psychological problem and so on. Trying to juggle all of that can be a full time job for an ME patient and/or a caregiver. ME patients need help that they don’t have to board a plane or take out a loan to access.
Pushing ME treatment down the food chain from a few specialists and major research centers to a more local level would be a blessing for ME patients around the world. My belief is that at some point, primary care physicians in communities everywhere need basic ME education to help with the day to day issues facing ME patients. Is Teitelbaum’s rather self-promoting money making venture the answer? I don’t know. If it means that a group of primary care doctors, be they natural practitioners or MDs, start looking at ME as a legitimate medical problem and stop marginalizing patients, I applaud it. The ND/MD communities have to start talking and cooperating in ME management. Such a development could open the door to patients without access to the Drs Klimas, Lapp and Bateman to GET HELP. To have someone take their issues more seriously. I believe an integrative approach can make a huge difference for ME patients.
The usual suspects–from the NHS in the UK to the NIH/CDC in the US–certainly aren’t helping in terms of funding research or promoting treatments and in some cases, are making things worse. My personal hope is that stirring up interest in providers across the spectrum will also help the push for more legitimate, bio-medical research.
Very well put! It is refreshing and encouraging for me to hear from someone who is a caregiver for a ME/CFS patient. You obviously care and have a non-fogged brain to state clearly and somewhat objectively what kind of situation many of us are in. I thank you for your caring and energy you put toward helping and healing.
Good Doctors, with the right experience of their patients know the limitations of scientific help. We do not need doctors promoting therapies, as we know our own limitations too.
Use what information is out there and filter it until it fits your condition. Use the ME expert advice and let the researchers catch up. Back them with their biomedical results and we will get the answers far more quickly.
Say no to money making efforts to distract you.
This could help a lot of new patients, who have no clue what’s wrong with them or what to do. It takes years and years of research to weed through the jargon out there for M.E. patients – much of it requiring a medical degree to understand. This kind of info could help lots of patients with chronic illness, even those who don’t have M.E. exactly. So many do not have access to good doctors, or to expert info. So many search for decades with no diagnosis. I don’t think it hurts to have many more doctors out there who can at least try some less harmful tactics when a sick patient first walks into their office, rather than running the usual basic tests and then sending the person to the psychiatrist when they don’t show obvious cancer, anemia, or mono.
A little better treatment, is better than terrible treatment. I have even had notes put on my official medical records that I was a hypochondriac and an intentional waster of medical resources! Even a “Here, try some Melatonin and sublingual Vit. D” would be so much better than that! The way chronically ill patients are treated by the medical industry in the US is a crime. I am all for anything that improves that, even in the slightest, to give us a little dignity and encourage doctors to hate us less for no reason other than that it hurts their egos that they can’t cure us. This way they can save face, they can try something from a long lost and see if we get just a little improvement – making them money and keeping their ego intact, and giving the patient perhaps a little relief from the agony of symptoms.
I’m sure this Dr is not serious. He has another interest than to help patient. I don’t trust him and I’ll never follow his suggestion. He’s not scientific, just bussines one.
Why shoot yourself in the foot? You hate him but don’t mention that you know anything about him or his ideas. I am a patient just like you, and his book helped me when doctors did not. I’m not cured, but I do feel a little better. I tried some of the supplements and lifestyle changes he suggested, along with seeing types of specialists he recommended. I bought supplements from Swanson’s which are cheap and have decent quality, mostly not from his website which were too expensive save a few that he seemed to do better than anywhere else.
The book is hard to read and overwhelming for anyone with brain fog. So I haven’t done it all, but a little at a time. And it did make my symptoms less severe, while we wait for a cure for decades in agony. Why not try something to feel a little bit better? He writes an endless list of things to try in each category – Sleep, Hormonal support, Infections, and Nutrition. The E for exercise is only to be done slowly, after several months of improvement, and only what you feel you can do and no more.
To me most of these things are common sense things, and not likely to hurt if you don’t overspend for things that you’re not sure fit you well. And again, you don’t have to give him a dime, you can see your own specialists using his ideas, or buy supplements from anywhere.
Why prevent yourself from trying things that may help you, simply out of an unfounded dislike of a total stranger? I didn’t know this doctor, and I hate the title of his book, but I tried it anyway and had some benefits. We M.E. patients need all the help we can get! Teitelbaum himself was a patient once, and believes he cured himself. So at least he gets what it feels like to be sick and desperate and confused. Whether he’s a good person after that doesn’t matter much to me, because of lot of what he suggests works to make me feel better.
If I really understood what SHINE was about I could take the survey. It seems very strange to be given a survey like this without any explanation of what SHINE is about.
However I do very much like the idea of various specialisms talking to each other. I think that the complimentary medicine people probably do pay attention to a range of other people in the healing professions.
We need to remember that there are many variations and facets to this syndrome we call CFS or ME/CFS. Throw in Fibro and we have many more. What works for one may not touch anothers’ basket of problems and symptoms.
I’ll be interested in knowing how many do come together to take part in this PAN organization.
Do you think he has invited Drs. Lapp and Klimas?
I’m sure they’ve been invited. SHINE for me is quite similar to what other ME/CFS experts do EXCEPT that there’s a major focus on hormones and using bio-identical hormones.
I fully support the idea of medical specialists working in an integrated fashion. What I don’t support is the idea of a traditionally trained medical doctor working outside of their expertise.
Naturopathic physician training is post-graduate training. It’s a four-year bachelor degree followed by four years of medical training, plus 1200 clinical hours – that’s almost ten years of education. The majority of traditional medical schools provide less then 25 hours of nutrition training.
If a naturopathic doctor started dispensing volumes of advice about operations, diseases and pharmaceutical drugs they would be called for malpractice.
I have a hard time with the SHINE protocol for the simple fact that Dr. T is WAAYY out of his area of expertise and it shows tremendous professional disrespect.
I would prefer to see him work WITH those experts.
I so agree with this, but most insurances in the US do not cover naturopathic practitioners at all! It will take decades likely to change that, if it ever happens – so a little knowledge by someone who otherwise would have no clue, is better than nothing at all. Many of us can’t afford to see someone not covered. Additionally, many of us do not live near a reputable naturopathic doctor. Once physicians see the results, many will become interested and invested and probably start to take it seriously and learn a lot more on their own and from patients, which is a very good thing if not the same as expert advice.
Dr. Dan Peterson and Dr. Montoya have put out better guides for physicians and they are free!!!
Yeah, quack, quack, quack Dr. T, especially the recommendations for exercise, which are a major part of this protocol.
Those guides are great, but are not nearly as comprehensive as the SHINE protocol. Your opinion is completely inaccurate – SHINE stands for:
Sleep
Hormonal Support
Infections
Nutrition
and the E is explained on his own website thus:
“EXERCISE: Exercise as able. After 10 weeks on the 4 steps above, you will be able to slowly increase your exercise-without being wiped out the next day!”
So it is SHIN for several months, until you start to get better and have more energy, and even then you’re only supposed to do what you are able and no more. I think it’s reasonable to assume that the body does need to recondition slowing when recovering from an illness – staying bedridden even when you have the energy to walk around a little is not a path to complete wellness. That just seems like common sense.
Learn about something before you decide you hate it. I don’t see anything to hate in his approach – in fact, it helped me in what little I tried of it so far, although of course it did not cure me. I would be grateful if all basic physicians knew at least that much – it’s a lot better than being completely ignorant and sending every person who is tired to the psychiatrist.
There is no hate involved in recognizing a quack for what he is. And having a different opinion from yours is not hate, a word you seem to through around a lot.
“After 10 weeks on the 4 steps above, you will be able to slowly increase your exercise-without being wiped out the next day!”
This statement says you WILL be able to increase your exercise without consequences AFTER 10 WEEKS on the first 4 steps. He doesn’t even say “MAY” be able — he ways WILL be able.
This may be helpful for people who have chronic fatigue and/or fibromyalgia but it is not helpful for those who have ME or ChronicFatigueSYNDROME. I don’t know anyone with ME/CFS who isn’t already doing as much as they can physically. He’s just trying to straddle the divide between those who know about exercise physiology and those who assume excercise is good for what ails everyone.
And yes, I read the stupid book long ago. It’s for the gullible and the suggestible person with fatigue. So his “education” program will misinform those who are foolish enough to pay him that outrageous amount for that “education.”
We certainly do not need more of that misinformation circulated. His protocol is actually a disservice to those who really have ME/CFS.
As an “alternative” practitioner myself, I have seen networks like the “PAN” that Dr. Teitlebaum is creating before. Some of these networks turn out to be helpful to the patients, others just benefit the founder, and others don’t benefit anyone. It very much depends on how it will be executed.
I believe that 8 hours of online training are not enough to produce good practitioners. The more successful networks I’ve seen include follow up and intervision in addition to an initial training.
Only time will tell if Dr. Teitlebaum’s network will have a positive impact. I very much hope that it will be helpful to people.
and mentoring!
One correct needs to be made to the article.
I have benefited from some of the treatments and supplements recommended in Fatigued to Fantastic, and am grateful for that. But neither his free survey, nor his book, require you to purchase HIS products. They tell you exactly what substance you should add, in what amounts – and you are free to get them anywhere. Although I have ordered a few things from his site that I thought he did better than anything else I could find, by and large I order Swanson supplements, which are recognized by several M.E. doctors to be of consistent quality for low prices. I buy the cheapest effective version of what is recommended, and many did in fact help – though none cured of course. There is absolutely no need to buy Teitelbaum’s stuff, nor does he ever claim that there is. Please fix this on the article so misinformation is not spread – it misrepresents him as a practitioner and contributor in our community.
Doctors knowing the SHINE protocol would be a step up from recommending we see a psychiatrist though, while we wait for a cure from medical researchers who can lessen inflammation of the brain stem and whatever else might be at the heart of this disease. At least it gives people who know nothing about our disease a range of options to try, and gives patients the feeling they are being heard. It is also likely to somewhat improve their symptoms while they await a cure, which is good for everybody. As long as the doctor does not have so much ego that they blame the patient if they do not respond, and simply move on to the next thing to try, or combination thereof.
Sunshine are you being paid to be an advocate for Dr T. I take massive vitamins cause I,like most people with Fibromyalgia have a leaky gut and don’t absorb well and yes I eat the Fibromyalgia diet because I would feel like a human vegetable without these things.But I am light years from fantastic and though I get great care every time I turn around it’s a new freaky symptom. So I am tired of voodoo and singing “give peace a chance”. I am for the hard core researchers looking for answers, looking at viruses, immunological problems and real science. Not someone charging me thousands for FLUFF. I want to be better not feel better!
Homeopathy and chiropractors are not credible in any way and by their own admission will not run true studies.
They shouldn’t be included in any factual research!
Dangerous and empty.
DISTURBING AND IRRESPONSIBLE
May help those with fatigue/burn out issues, may not, but the fact that it will definately go against those who need help and research the most – the mosty severely ill, those with severe ME/CFS, is hugely reckless and irresponsible. Just so he can make more money, he doesn’t care about the consequences this will have on the most severely ill. “trained” doctors will “think” they can treat and cure with this crap and it will be the patient’s own fault if it doesn’t work, sounds familiar…
“you will be able to increase your exercise without consequences after following the first 4 steps for 10 weeks”
Are you SURE about that one Sunshine?
This man is a menace.