Dr. Teitelbaum has been studying and treating chronic fatigue syndrome (ME/CFS) and fibromyalgia since he came down with ME/CFS over thirty years ago. The author of the best-selling ME/CFS treatment book, “From Fatigued to Fantastic‘, Dr. Teitelbaum talked for 48 minutes on his basic approach talk to ME/CFS and FM at the American Board of Integrative Holistic Medicine conference.
(He noted that all the pay/royalties he gets from the products he designs and directs people to go to charity. )
This is a basic overview of ME/CFS and FM treatment. It’s interesting while watching the video or reading the overview.to contemplate the differences between ME/CFS experts in this field One group of ME/CFS/FM experts (Teitelbaum, Holtorf, Garabedian) appears to place a strong focus on hormones, another group (Peterson, Lerner, Chia, Klimas, Dantini) focuses more on immunological issues and pathogens. Dr. Bateman and Dr. Natelson appear to take a more conservative approach than either group and it’s not clear, at least to me, what group Dr. Lapp, who is well acquainted with Ampligen falls into.
Anyway – here’s a short introduction to Chronic Fatigue Syndrome and Fibromyalgia treatment from Dr. Teitelbaum.
Highlights
Teitelbaum began by stating that most people with ME/CFS and FM can get well (!), and then showed a study indicating that 91% of patients treated with an ‘integrated treatment approach’ experienced moderate to significant improvement in their symptoms. The average increase in quality of life was 75%.
Dr. Teitelbaum reports he sees progress in most of his patients
That’s not the same as ‘getting well’, but it’s certainly significant and it does track with many ME/CFS practitioner’s statements that ME/CFS is generally treatable.
He noted a very interesting pattern where improving one system leads to improvement for awhile but ultimately can put stress on another system that causes the patient to crash.
Besides fatigue Dr. Teitelbaum picked out insomnia, muscle and joint aches, sensitivities to many substances, brain fog, spastic colon, leaky gut, decreased sex drive, and an interesting one not often associated with ME/CFS – chronic sinusitis. Most people with ME/CFS/FM he said, had chronic sinusitis and post-nasal drip.
He recommended NAET very highly for treating allergies and sensitivities.
He believes, like Dr. Cheney, that ME/CFS is caused by a body-wide energy crisis except that Teitelbaum targets the hypothalamus instead of the heart. Infections, hormonal deficiencies, poor sleep, etc. can all cause the body to ‘blow a fuse’. Dr. Teitelbaum believes the hypothalamus, which controls sleep, hormones, temperature, and autonomic functioning puts the body in a kind of hibernation to protect it.
“When your muscles get exhausted they go tight – and they hurt”.
Of course, the muscles require a lot of energy as well. When they run out of energy Teitelbaum noted that they get locked in a shortened position – something that tracks well with my experience of contracted, painful muscles. Peter Rowe has found that the nerves associated with the muscles aren’t able to elongate as they should in ME/CFS: i.e., they remain ‘tight’). Those painful muscles then set the stage for central sensitization (increased pain sensitivity).
Onset Matters
Teitelbaum believes that people with a gradual onset often have more problems with low thyroid or other hormonal problems, yeast, autoimmune and sleep disorders, and severe stress. (Autoimmune disorders often trigger a ‘secondary fibromyalgia’ that rheumatologists miss.)
Rapid onset patients, on the other hand, suggest that infection, injury, and pregnancy may cause a disturbed hormonal environment.
Dr. Teitelbaum at the American Board of Integrative Holistic Medicine Conference in 2013
(Also find the video here)
Then Teitelbaum talked about the psychospiritual side of ME/CFS and ‘doing what feels good’. This side of medicine has people determine what feels good and keep doing those things.
Efficiency Matters – A Standardized Approach
He uses standardized questionnaires to assess how patients are doing, noting that they can enable a doctor to accomplish in five minutes what would take an hour. He gives them out to physicians for free (endfatigue@aol.com).
An ME/CFS and FM practitioners networking site – what a great idea 🙂
ME/CFS and Fibromyalgia Practitioner Network
Noting that there’s no way that anyone can know all or even half the things that might be helpful in this field, Teitelbaum has also set up a free Fatigue and Fibromyalgia Practitioners network to allow practitioners from different fields to share their insights (www.vitality101.com/FFPN/
Shine Protocol
Nutrition
Some tidbits from the nutrition section. Use powders instead of pills. Stay away from sugar (except for chocolate – a health food), add salt, do a high protein low carb diet, and consider a mitochondrial enhancer (D-Ribose, others).
D-Ribose
He’s found significant success with D-ribose (5 grams 3x’s a day for three weeks) in two studies, one of them quite large. After three weeks he drops it down to twice a day. He gives a B-complex vitamin with it.
He noted that the energy recipe (D-Ribose, COQ10, magnesium, etc.) is amazingly like you treat heart failure – another energy production crisis.
Sleep
He asserted that if anyone answers yes, to the question “Can you get a good night’s sleep?” they don’t have fibromyalgia or chronic fatigue syndrome (ME/CFS)
Hmm…candles, Epsom salts, chocolate, a little wine (very little) – sounds good!
After noting that there are many different types of sleep aids (and describing some of them) Dr. Teitelbaum’s described his favorite ‘high tech’ recipe for sleep: two cups of Epsom salts in a warm bath, a little red wine, some chocolate and candles an hour before bed. (Being relaxed before sleep has been shown to result in deeper sleep.)
He prefers a natural approach but particularly with bibromyalgia he mixes and matches a variety of drugs (Trazodone, Flexeril, Neurontin and sometimes Ambien) to get patients the eight hours of sleep they need to improve.
Hormones
Dr. Teitelbaum believes that even mild hormone deficiencies can cause widespread problems and he has little faith in the ‘normal’ ranges that most doctors use to determine if deficits are present. He believes that most people who need thyroid supplementation test in the ‘normal range’ and he determines thyroid deficiency by symptoms. He said his thyroid talk takes an hour, but, in general to adjusts the dose to how the patient is feeling and checks their free T4.
Adrenal dysfunction can simply be indicated if all of a sudden a person with ME/CFS feels they MUST eat something.
Infections
Many infections have been associated with ME/CFS, but there’s one that every doctor should look for – Candida. Sinusitis and spastic colon are dead giveaways. He prescribes low-sugar diets, probiotics, antifungals (Diflucan), and looks for a host of other infections, but the key infection to treat is in his opinion … candida.
Pain and Small Fiber Neuropathy
About half of people with fibromyalgia have small fiber neuropathy, most of whom also have IgG subclass deficiencies and dysautonomia (problems standing). IVIG can be helpful (and very expensive at $50K for 6 months of treatment). He uses it in the sickest 15% who don’t respond to anything else.
Mind/Body
Being driven himself Dr. Teitelbaum is well acquainted with the role the mind/body interaction can play. If you’re an overachiever, if you try to be all things to all people, if you have trouble saying no – you’re setting up for problems with this disorder. Learn how to say “No!” Teitelbaum emphasized.
He ended by talking about other alternative treatments. He singled out human chorionic gonadotropin (HCG) for chronic pain.
__________________________________
Dr. Teitelbaum later responded to some of the negative comments:
“Wow– Some pretty intense stuff!
It reminds me of how frustrating this illness can be. I remember when I had the illness. It crushed the life and hope out of me – taking away the goals and purposes in life I held most dear. And when my professors told me that they could not find a cause for the illness, so I must be depressed, this only added to the pain.
Yet, I did learn how to recover. And being a physician, I made the choice to help others. This meant designing a research protocol based on thousands of studies and many years of experience, including learning from my own recovery, and running a double-blind placebo-controlled study put together with the gracious help of researchers at the NIH.
Our published study showed that 91% of people improve with an average 75% increase in quality of life at 99 days and 91% at two years (p<.0001 vs placebo) using SHINE. This study was published in a peer-reviewed journal, and I accepted no drug company funding, paying for the study out of my own pocket.
Instead of patenting the protocol, as is often done, I put the protocol into the public domain so that everyone could use it. Free. I then put the information in a book, and have spent the last 40 years educating practitioners and the public about the illness, to help as many people get well as I could.
I will admit though. It is painful when some people write harsh posts attacking me. I do take comfort though, in that I have never seen a negative post from any of the thousands of people I have treated. Simply put, I would’ve made more money in my medical practice with much less work and grief had I not focused on helping people with CFS and fibromyalgia. Yet, I have not regretted my decision for a moment. I take great joy in the tens of thousands of people that I have helped, and continue to help, reclaim their lives.
CFS and fibromyalgia are very treatable. This does not, of course, mean there is a cure for everyone. Some do reclaim full health as I did. Most, however, find that the quality of their life improves markedly with treatment.
I do understand that many people feel angry and drained from having tried treatments that did not help, or more often from seeing physicians who simply told them that they were crazy. I remember my anger and hurt with the illness, and truly bear those of you who wrote the attacking posts no ill will for your feelings. To those angry with the work I’ve done, I apologize for any discomfort my efforts may have brought you and invite you to simply discard the information—like a shoe that does not fit you.
However, for the others who do seek the information I offer to help them reclaim their lives and health, I will continue to dedicate my life to helping them. Just as in the video above, where I was lecturing with no recompense, selling nothing that I profited from, and happily creating 400 competitors by teaching physicians in the audience how to help those with this illness– for those continuing to seek help, I take great joy in continuing with my passion. Helping to bring the possibility of health to everyone I can.
Love and Blessings
Dr. T”
I read his book when it first came out, and my summary then and still is, he is only in the “game” because we are still looking for a definitive test for CFS and even a cause. He has always just thrown in so many answers, did 30 years ago when I first got sick. He starts his video out with
calling Chronic Fatigue Syndrome, “chronic fatigue”.. once again, he does what so many drs do out there who think they know, but really don’t. Yes, all doctors treat people who are tired.. So, a few candles, a warm bath, a little chocolate… gosh, doctor, so glad it works for you. I think those of us who are really sick with this miserable disease, have tired your little tricks and many more, -and still are awake at 3 in the morning. I have tried all the things that doctors have thrown at me, including acupuncture, diet, etc.. I am still sick. I have no respect for doctors like these who act like they are such experts just because they got into this from the beginning. Great, his proceeds go to non-profits, but did the proceeds from his book and his patients always go to non-profits? I don’t care if doctors profit off of real, solid research. Just don’t give me this stuff about ‘ I can successfully treat chronic fatigue..”.So, far, with all I have gone through, with all the plane trips to see the best of the reseachers out there,I am still sick. I wouldn’t walk across the street to see this guy. He just doesn’t know. Sorry, Cort. Just my opinion.
No problem, Jeanie :).
I think a lot of people probably on this website are in the same situation because trying everything they could think of didn’t work out. That’s why we’re still here. We’re in that 20 percent group that doesn’t show a lot of results.
By the same token I’m sure he does help people. I know of people who’ve benefited a lot from the SHINE protocol.
Absolutely Correct.
Soon as I saw ‘91% improved’ I skipped down to comments. I wish conferences like these were not held. This just clutters up real research. Everything he has mentioned will generally not equal to any significant improvement. I understand that you post anything ME/CFS related Cort, but I really wouldn’t consider this significant enough to report.
More importantly Cort, do you know what’s happening at all with Pridgens publication? It’s over a month late. Now that’s REAL news.
🙂
Not to worry about Pridgen! He showed up on a local TV channel saying the results were ‘very successful’. I assume it’s just taking more time than expected. Here’s the man himself…
I am doing a jacked-up version of the Pridgen Protocol and after two weeks I knew something dramatic was happening – I am really, really pleased 🙂
Cool….We don’t actually know what his Protocol is – but congratulations. I imagine you’re doing something close to it.
Yes it is very cool ! I had my physician contact Dr. Pridgen and there was some confidentiality required but he was absolutely wiling to work with my physician while we await the publishing of his results. I have added a couple of complimentary therapies that I think are quite synergistic with the protocol and have allowed me to progress pretty rapidly. And I have started sleeping like a normal person – after 28 years of tossing and turning that alone is like winning a lottery !!!
Wow… that is exciting……may be this thing is really going to work out..wouldn’t that be something…
are you able to list drugs and doses for the protocol your on? if so please do.
Hi David,
Please let me know if you get this. My doctor is also working with Dr. Pridgen and the protocol is Celebrex 200mg twice a day and Famvir 500mg twice a day taken at the same time. Now I was told I could feel good in as little as 3 days. I am on day 8 and don’t feel anything yet but I called down to Dr. Pridgen’s office and was told for many that they don’t feel anything for up to 3 weeks. My problem is my insurance company is giving me severe issues with approving Celebrex so I only have 1 pill left (my doctor provided me with samples). I’m really hoping that my appeal for Celebrex will be approved and then I can give it a long fair shot and report back.
I was also told by my doctor that there are actually a total of 3 protocols but this is the one that Dr. Pridgen is seeing the most success with. In fact, in one of his videos he actually gives the medications away by showing the top of the bottles but he doesn’t give the strength.
I was expecting him to let the cat out of the bag at least a month ago so I’m not sure what is going on and it is a little frustrating because Chris is the only review I have seen for the protocol. I’m not sure what he means by using complimentary therapies and he didn’t respond so I hope this helps. Feel free to have your doc call Dr. Pridgen’s office and get on the protocol and report back. That would be great! Please let us know.
Thanks, Hope
please, please share the protacol with us please
Hi Judy,
Please see my reply to David above.
I hope some more people can get on this and report some results back. I’m hoping for the best!
Take great care!
Hope
Goodmorning Jeanie,
I totally agree.
There is a lack of structure in this kind of research.
It is still too vague.
We are living with too many lies all the time.
I think detoxification (which might take years) of organs especially liver and brain is maybe the core of a treatment. This then gradually backed up with the right supplements (determined on the basis of profound blood analyses), tooth care, strict diet and rest. I’ve been on this kind of treatment for a year and there is, layer after layer, problem after problem solved in a gradual and slow pace.
It is a logical an rational approach.
I do not take medication (not even a painkiller) as it appears to make things worse!
I send a lot of healing forces to all of us!
Hadewych.
What’s with the anger? You don’t respect him because he didn’t cure you, you’re still sick. So I assume that means you don’t respect any other M.E. specialist in the world either, and believe they should not call themselves ‘experts’ either? Or did I miss something and one of them cured you?
We’re all in the same boat, before you cast aspersions on those trying to help, consider that your judgement may discourage new patients from trying such treatments – which for many, like myself, were significantly helpful. No, I’m not cured. But I didn’t really expect to be. I feel a bit better, with lesser symptoms, and that’s what he claimed. I would want any patient to find even the minor amount of relief that I have, and Teitelbaum is the one who gave me the information for it. No other doctor made that relief possible. He’s not my personal doctor, and far as I understand he doesn’t take any new patients. So I’m grateful for the book because it was the only way I was going to get that information that made me slightly better than I was. And I was in AGONY, so even a little bit better is a LOT better. Every time I stop what I’m doing, I get worse. I believe he knows what he’s talking about, and yeah, it’s helpful.
I do believe you missed something in your reply to the woman who thinks Dr.
Teitelbaum has nothing to offer and that is compassion for her frustration and anger about her situation. You too sound frustrated and angry about your situation as well. You have different experiences and opinion’s regarding what this doctor offers, but are united in understanding we’re in a miserable and frustrating condition together. We need to be patient first of all with ourselves and then extend that patience to each other. We’re all we’ve got much of the time. I know your suffering firsthand and am with you in spirit.
Hi everybody!
It has been almost 48 hours since I have started Dr. Pridgen’s protocol which consists of Celebrex 200mg twice a day and Famvir 500mg also taken twice a day at the exact same time as Celebrex.
Cort he has given my doctor and his patients this protocol and even told my doctor that this is the optimal dose. I’m not sure why he isn’t just telling everybody. My doctor did tell me that there are 2 other combinations if this one doesn’t work however this is the one showing the most success. I’m hoping it will kick in for me! Evidently some patients are having extreme success with this as early as 3 days after starting this treatment.
Good luck everyone! I hope it works for us all!
Please feel free to ask me any questions you might have.
Hope
Xoxo
Thanks Hope – good luck!
Well, I have tried part of his protocol of taking Ribose and the Energy Revitalization powder for my extreme adrenal fatigue but none of the other supplements he recommended. I have been taking them for six weeks. I have gone from extreme exhaustion in the morning and 3-hour naps several times a week to very mild tiredness and rarely taking a nap at all. To me it is absolutely amazing and life-changing. I know what the Placebo Effect is and this ain’t it! It is far too large of a change, too quickly. I am grateful for his books and expertise.
Honey, it is your negative attitude that is keeping you sick.(And possibly your diet) If you haven’t gotten better after trying every treatment there is then the problem is not with the treatments but your thinking. You keep telling yourself that no one can ever cure you so it is true.
If all it took for me to go to sleep is some chocolate & candles I wouldn’t consider myself an insomniac brought on by CFS. I slept fine until the 2nd week of October 1986. I now take Klonopin, Doxepin & Ambien and it still takes me 3-4 hours to go to sleep on a Good night. I got disqualified from disability when my doctor’s note read “chronic fatigue” instead of Chronic Fatigue Syndrome. I’ve also never met nor heard of anyone recovering from CFS/ME. I have heard of a lot of people recovering from Epstein Barr Virus which is sometimes confused or lumped in with CFS. I suspect anyone that has recovered from this doctors magical cure had some thyroid problem or EBV.
Hi Jane – check out recovery stories gathered by Health Rising here – https://www.healthrising.org/forums/resources/categories/recovery-recovering-stories-click-to-see-categories.123/
I’m still sick 😷🤢 with chronic fatigue, fibromyalgia….
After eight years of following DR. T’S ADVICE..EVEN WENT TO HAWAII TO SEE HIM… HE’S RETIRED NOW AND I HAVE BEEN TO THREE OTHER SPECIALIST DOCTORS…
I’M STILL SICK 😷🤢 AND NEED TO STOP SEEING DOCTORS!!!
PROBABLY WILL TRY GARY BRECKA NEXT HUMAN BIOLOGIST 🧬 I
I’ve had a different experience with Dr. Teitelbaum’s protocol than Jeanie. For me it’s been a lifesaver. It doesn’t cure the disease by any stretch (what does??) but the 2 1/2 years I’ve been on the SHINE plan has helped me manage what was an enormous downward spiral. My battles have been complicated by having 2 other autoimmune conditions; often I get one in good shape and another one acts up. But then I suspect that’s the case with most cfs/me sufferers. This disease is full of own nasty surprises too. Often I get unexpected “new” symptoms that weren’t apparent 6 months ago. It’s a constant fight but I continually look for new things to try. I’m convinced there is an answer(s). I’m about to try a slightly modified version of Ken Lassensen’s plan since Mutaflor isn’t readily available. One thing is certain, having a doctor who listens and also is willing to additional options is crucial.
The following opinions are based on my personal experience only, with no intent to discredit Doctor Teitlebaum.
My illness started after an upper-respiratory infection in 1988 from which I did not fully recover. My condition gradually worsened while exposed to chemicals during an office renovation a year later. In 1990, I was diagnosed with severe ME, FM and MCS. Currently, with adequate pacing, I would describe my condition as “mostly housebound”.
I haven’t watched Doctor Teitlebaum’s video, although I have tried some of the protocols described in his book.
With respect to NAET, two years ago I completed the initial course of 22 treatments, and countless additional treatments for individual foods and chemicals. I experienced no benefit; in fact, I found the treatments fatiguing, despite their gentle and non-invasive nature.
I’ve addressed my hormonal imbalances with medications, candida with both pharmaceuticals (Diflucan for 6 weeks) and herbals with no improvement. D-Ribose had no effect on me. I’ve attempted to resolve my sleep disorder, consulting with two excellent GP’s, and two sleep specialists. The sleep-restriction component of “sleep hygiene” nearly killed me (first, falling asleep behind the wheel of my car; second, severe cardiac complications). I have been unable to tolerate any of the natural or pharmaceutical sleep aids recommended by Doctor Teitlebaum (or others), despite them being compounded to provide a miniscule dose.
With respect to “doing what feels good”, my experience is that pleasurable activities turn into a cruel type of “aversion therapy”. The longer I do an activity, any activity, the worse I feel, and the less-functional I am. Ultimately, I end up hating hobbies I previously enjoyed because they are just too difficult. Even knitting, or yoga done lying on the floor are too strenuous.
With the complication of POTS (made worse by heat), and severe alcohol intolerance, Doctor Teitlebaum’s suggestions of a warm bath and a glass of wine to promote good sleep seem ill-advised.
So . . . . my sense is that Doctor Teitllebaum may be able to help people who are “chronically fatigued”, but I question whether most of his patients actually have ME/CFS, at least according to the strictest diagnostic criteria.
You’re definitely not in the SHINE protocol subset – you’ve tried just about everything to no avail.
THIS ^^^^^
Keep in kind that Dr. Teitelbaum is in this for the money. He is also the founder behind the “Fibro and Fatigue Centers”. His “SHINE” is common sense and something that most of us have found through trial and error. Hopefully every sufferer out there is aware that lifestyle, nutrition and sleep are all key components as to how you feel every day.
I believe that the supplements and suggestions are valid, I just wish he didn’t use the sufferers as his guinea pigs and prey on our desperation.
Does it help? Sometimes.
Does it cure? Nope.
Should you invest thousands of dollars in his own brand of supplements? I wouldn’t.
I can understand not wanting to spend lots of money on ‘his’ supplements – some of which you can get at Prohealth at what I assume are reasonable prices – and I’m sure that Dr. Teitelbaum has done fine for himself financially, but does that mean that he’s just in it for the money? To me those two facts mean that he’s found a way to make a good living at this AND I think that that can also go along with being committed to helping patients. Some doctors that make quite of money (Cheney) are clearly passionately committed whether they’re right or wrong to helping people and understanding ME/CFS.
If he doesn’t use sufferers as his “guinea pigs” how will research be done? They are the ones who walked in and asked for the help. These are not high-dose prescription drugs he is using.
I agree w/ Jeanie….I’ve never been impressed w/ this guy…just bc he’s been on Dr. Oz doesn’t mean anything….the charities he says he donates his proceeds to are never confermed …I’ve had experience w/ other drs who sell stuff….non of the stuff has worked for me…..he gives no scientific studies….sort of the chiropractic approach…Cort, I wish you would skip this snake oil dr…when we have so many good drs. we’d like to hear from…that are in parts of the country we cannot access…who do help….more from Dr. Lapp & the others please…this newsletter is one of the best sources we have for info….except for Tietelbaum….thanks for all of the rest….Judy
Lots of negative stuff about Teitelbaum…..Have you ever read “From Fatigued To Fantastic”? That’s the most comprehensive book on treating ME/CFS and FM that I’ve seen. Does it fit into the category of snake oil?
thanks Cort for sticking up for Teitelbaum. I dont think he is the best CFS or ME Dr out there – his products and protocol didnt help me personally. However I really dont accept the position people rashly take in discrediting people saying they dont know anything and are in it for the money. Clearly he knows a bit and helps some people – not everything or everybody. He has contributed to the wider debate and Im always interested to hear from all practitioners in this field who have seen many cases and formed an opinion – even if I dont agree with it.
Thanks for keeping a balance.
It is snake oil. Check out the studies he refers to. Most of them lack a control group, they were done by him, and none of them are the double-blind placebo controlled studies that are considered the gold standard in academia. Of course he cured himself! He shows every sign of being a shyster. None of his supplements are original, so why doesn’t he just recommend high quality existing brands? I’m waiting for the infomercial. I have read his book – most of it common sense. The rest is junk and unproven. It’s contradictory to say that the reason for low cortisol in CFS is due to the hypothalamus, but then sell a supplement that somehow “repairs” the adrenal gland. The adrenal gland is not the problem. He even states that. His kind of medical practice is why people don’t believe it’s a real disease – he’s prescribing vitamins and herbs for Christ’s sake.
yes, was one of the first books I read 3 yrs ago after diagnosis….some of the common sense stuff which we’re all doing helps….and some of the supplements I use anyway….read about in other places…a much more complete reference is on Kindle for PC …was free Kindle use a year ago…not sure if still is…CFS Patient Erica Verrillo gave her complete time to research this huge
volume which is too extensive to print: Chronic Fatigue Syndrome: A Treatment Guide….it’s only a $4.00 charge on Amazon…the research for each suggestion can be clicked on immedietly and brought up…an instant bibliography….
I am so impressed w/ this publication….however it does not mention Savella which has been a huge help to me as prescribed by my neurologist @ KUMC…
this is the type of info we appreciate hearing from Cort about….does anyone know if the Kindle for PC usage is still free????
So, just because he sells products he is a fraud? I tried part of his protocol and after only a few weeks improved immensely. Perhaps you are just negative in general and don’t really know any thing about him.
I can certainly understand people’s frustration and his treatment protocal does seem simplistic but I think he means well and as Cort says, there are a subset of patients he’s been able to help.
After saying his treatment seemed simplistic I thought about Dr. Terry Wahl, who by eating 9 cups of various vegetables and fruits daily and eliminating other foods, went from wheelchair bound to riding her bike 5 miles to work everyday, so sometimes simplistic works! At any rate, I do think Dr. teitelbaum truly wants to help people.
I have to butt in here to add that what Wahls did was not merely eat a lot of vegetables (and I think she also recommends organic meat, specifically organ meats). She also took and takes some supplements, and she had some kind of electro-stimulation therapy on her muscles, if I am not mistaken. I don’t have her book, but I have gleaned these things from seeing a few of her interviews. A relatively simple protocol, but not quite as simple as eating colorful vegetables.
I like Teitelbaum, and I take a couple of his supplements. They are reasonably priced. It is claimed profits go to his foundation, but I have no idea how this money is spent. All I know is the supplements are IMO helpful for me and reasonably priced.
20 years into my illness, all I can say is anyone who writes a book titled From Fatigued to Fantastic (and I have read it) does not understand my illness.
I understand where you’re coming from. It doesn’t reflect my sense of ME/CFS (after 30 years either.) If you can get past the title, though, – and I really dislike the title as well – it’s really quite a book. That title reflects something about Dr. Teitelbaum ‘salesmanship’ that some people have problems with. I imagine many people look at the title and turn away, which is a shame, because there’s a ton of information in that book. You can probably pick up a used copy really cheap if you’re interested.
I have read it and tried out some of the things, including working with an MD who follows Dr T’s protocols. None of it helped.
I did indeed go from fatigued to a huge improvement in a matter of weeks following his protocol. Perhaps it does not help everyone. Have you tried it even?
Congratulations Sue :).
Despite my poor response to Doctor Teitlebaum’s SHINE protocol (as described in a previous comment), I watched the video. I found it interesting, but . . .
Doctor Teitlebaum states (just before the 44 minute mark): Chronic Fatigue Syndrome is “an illness of people who have low self-esteem who are over-achievers trying to get approval from somebody who just wasn’t going to give it”.
Based on the stigma associated with this illness, I don’t think this belief advances our cause.
I cringed when I saw that as well – I don’t think it was particularly helpful and I don’t think studies have borne that out at all. He does put himself in that category – he was an overachiever – and he’s right about one thing – I do find it difficult to say No…Learning to say no is a good thing. He’s certainly a controversial figure 🙂
The negativity of spoonies continues to astound me.
I will agree Dr. T is a bit of a goof ball and surely his “research” is poorly designed and out-dated but his book changed my life. What’s more is his methods are indeed evidenced-based–far more so than some other things I’ve seen. I was very, very ill with CFS for 15 years, found his book, found a FFC practitioner and noticed improvement immediately. Was it cheap? No. But getting your life back is priceless. I think we all can agree.
For those who have read FF2F, I’d hardly call it simplistic! I nod to Betty for mentioning Dr. Wahls who also found improvement in simple solutions, however. (Granted her approach is quite a bit more than lots of vegetables!) It is possible yet we get lost in the minutiae of research–layperson & clinician alike who cannot see the forest for the trees. I actually met Dr. Wahl’s 2 years ago and talked to her about my own recovery from CFS and parallels in my treatment. I can assure you she is no snake-oil salesman either.
Worst of all is this out and out ad hominim attack against Dr. T who is, or once was, just like us. I get this myself from the community who views with deep, deep skepticism when they hear of my recovery or some of my treatment approaches. I suffered for over a decade just like you, and take great offense that anyone would undermine my experience as if it were not genuine. I’m sure Dr. T would feel the same.
Dr. T and his protocol have not set back effective treatments for CFS. Close-minded thinking and dogmatism have set the CFS cause back. Thanks Cort for always providing a clear voice of reason.
All those “negative voices” are sick people taking up for themselves.
The doctor who ultimately identifies a cure for CFS is not going to be one touting vitamins, advocating the consumption of chocolates while taking a warm bath, and accusing his patients of having low self-esteem.
The doctor who cures CFS is not going to be Dr. T.
Amen to that, Liz
Frank, I may be out-of-touch, but what is a “spoonie?”
Jeanie, I recently came across this word too when Goodreads started a Spoonie book club – it’s a term used for anyone with a chronic illness. I bet it got it’s name from the idea that we only have so many spoons to use per day, so use them wisely. ( or something like that.) 🙂
Good Frank! Each of us experiences our common illness differently. One person’s severity should not invalidate our suffering, nor should another person’s recovery be invalidated because we, as yet, have not experienced anything similar.
Frank touches upon a significant point – closed minded thinking and dogmatism (I am certainly not immune to this). None of us thinks of ourselves as “closed minded”, yet, in a sense, when we seek out a specific treatment, therapy, or remedy, we are – in fact – separating the mind from the body. By focusing all our hopes, and attention, on a given targeted physical ‘fix’, we are at risk of “missing the forest for the trees”. Every system of the body is affected by the same thing… The food we eat. It is not oversimplifying to prioritize the what, why, when, how, and how much we eat. “Let food be thy medicine” was the original physician’s prescription, and should be the first place we look to begin cultivating our best health. It is the one thing we have total control over. We can’t feel like a million bucks… eating from the dollar menu.
Hmmm.. I am a vegetarian, so I obviously don’t eat from the “dollar menu”. Everything I buy at the grocery store is fresh, wholesome food. I’ve been sick since 1980.
Jeanie, I know what you mean, I used to feel I was doing all the “right” things and “eating healthy” when buying bright vegetables at the grocery store, But my definition of “eating healthy” (which was formed years ago) no longer matched the food supply reality of today.
Fruits and vegetables are bred today to enhance certain qualities: firmness for shipping, bright color to appeal to consumers eyes, shorter growth and ripening cycles. They are sprayed, and even bleached for longer shelf life. All these things are done throughout the manufacturing + distribution of our food for one basic reason: Increase Sales.
Little – or No – attention is given to increasing (or even Maintaining) the Nutritional Value of that produce. Not to mention all the chemical fertilizers, pesticides, and genetic modification used in our modern Assembly line food production system. The same is true of Eggs, Dairy, Grains, and of course meats (which you’ve wisely removed from your diet)
Certainly, eating grocery store fruits and vegetables is better than eating Fast food + Junk food. Certainly, eating organic and locally grown fruits + vegetables is better than getting them from the grocery store. Yet, what is the Nutritional value produced by today’s seed varieties?
haven’t read this guy’s book and read this partly to see if I should buy it. Still think some of this criticism is unjustified. So his ideas don’t help everyone – that isn’t a reason to criticise interventions that do help a lot of people nor to claim that yours is the only true illness. D-ribose doesn’t do anything for me that a teaspoon of ordinary sugar wouldn’t do – except that I try to avoid sugar – doesn’t mean I criticise those who do respond to it. I can now get a good night’s sleep most of the time but sadly I’m not totally recovered. I’d still say I have exercise intolerance and fatigue, although not as chronic as it was, and I’m very aware that things coud easily go wrong again.
Warm baths with magnesium sulphate are often beneficial to people with pain who can’t tolerate magnesium supplements. For those who can’t take warm baths there are magensium oil preparations to spray on the skin. It’s a simple and relatively cheap intervention that helps a lot of people. Alcohol intolerance is pretty common in ME but since I’ve started to recover I find I can benefit from a glass. Treat yourself for liver dysfunction with N-acetyl-cysteine and a low fat diet and maybe you’d benefit too.
I also note his mention of sinusitis – many people report problems with this and it’s certainly one of my issues. I suspect it caused cranial nerve damage. There are simple interventions that will help sinusitis.
People have to live. All doctors make money treating sick people, doesn’t mean that is the only reason they do it. Most importantly here is a guy that was trying to help people and not saying it was all a psychiatric issue when other people were, he deserves to be cut some slack for that.
He says he’s not in it for the money. When I finally decided to go see him in Annapolis, Maryland I found out he had moved to Hawaii.
I really don’t care if he makes a lot of money…doctors should…his ideas are so simplistic AND ….there are many people who recover after a few years doing nothing…
obviouslly we are not among those…..I do know I would not be doing as good as I am if I were eating chocolate w/ sugar as he suggests…I would not be able to stop….
the sugar is so addictive….for many …..I have never had headaches w/ this which I attribute to a life long diet of no sugar…chocolate ok if one uses cocoa powder mixed w/ a little healthy oil and some stevia…bc I do start to have headaches when I cheat on my no sugar diet…if I were eating lots of sugar, I’m sure the headaches would run rampit..j.
They just appear simplistic in this basic overview of ME/CFS in 45 minutes. If you check out Fatigued To Fantastic you’ll find a really complex and layered take on the different treatment possibilities for ME/CFS. It almost encyclopedic in its approach.
Wow, what an extreme amount of negativity. I must say to the patient community, it is one thing to contribute a reasoned comment as to your personal experience, or areas where you may think a theorist is lacking, but I get tired of seeing the overwhelming number of negative and sometimes vicious replies to nearly every article on this site. It is unhealthy for you to keep posting such, and unhealthy for the rest of us to keep reading it, unhealthy to Cort, and overall unproductive to the cause. Enough with the personal attacks already! I appreciate any researcher who comes into this game trying to give options, who actually acknowledges this disease is a serious health concern!
Although I hate the title of the book, I found Fatigued to Fantastic enormously helpful. Teitelbaum doesn’t exactly claim to be able to “cure” M.E. – all he says is that the body’s systems fail for a number of reasons, and then it gets worse as other systems are taxed. Although clumsily put, he is also saying your mental well-being is an integral part of the healing (or system failing) process – and that is well-backed by research across many diseases. A body under more stress than others can be subject to infection or disease that a less-stressed body might not, that is all. His protocols give support for systems most damaged to heal, so the body as a whole can start to put itself back together. In fact, this comprehensive approach is the same as what Dr. Klimas, and many other prominent researchers, support. No one yet has been able to cure a patient by focusing on one single thing alone, although it will be great if one day that is possible.
The key difference is, many of these other researchers – particularly the immunologists – are focused on discovering the cause of M.E. in the form of a virus or something else easily pinpointed, which is quite trendy right now. In the meantime though, patients are suffering. So, Teitelbaum and others like him focus on how to alleviate symptoms NOW, rather that waiting a decade or four for a cure. I’ll take it! I don’t know why that should make others so angry, he is not campaigning against current research or to list M.E. as a mental illness. He just saying “take this – it might make you feel better,” and I’m cool with that, that’s what doctors are for.
I found the book too dense to understand in my condition, so I have tried bits and pieces of it that I could manage. Even in the small amount that I tried, I did see significant improvement, which I have been able to keep up for several years. When I take the supplements and follow sleep routines consistently, I do better, and when I lapse because I overdo or I run out of money, I do worse. I haven’t tried everything in the book yet, it has an enormous amount of stuff in it. But I can’t believe other patients are complaining about being given too many options! Are you just looking for a reason to be angry? This disease covers every system in the body and overlaps with multiple other diseases, and as yet there is no reliable test to define any of them, so sue him for trying to address them all. He didn’t have to write the book, he could have just soaked up money from patients without helping anyone outside.
I found the D-Ribose to be helpful, but I could not afford to keep it up. It is more than $1/day, and I did it for about 2.5 years. When I took it consistently, I had a bit more energy consistently, and when I stopped I felt more drained. It didn’t give me enough results to justify the enormous cost, in addition to all the other things I must take. Other nutritional things worked too, and they were cheaper.
A note, his point about the muscles shortening and stiffening is why yoga can be enormously helpful.
I get why living with this disease for decades can make you enormously bitter, but why attack every single person who tries to help us (especially a fellow ill person) who doesn’t have the cure yet? If you had gotten better after being enormously sick, wouldn’t you want to spread the word about what you did that got you there, and if you also had a medical degree wouldn’t you want to apply that to as many patients as you could? He clearly does not give a one-size-fits-all answer, hence the book covering so many different systems and lists of medicine and supplement options. He takes what he learns from his patients, and shares that info, like any good once-patient would. How would you feel if you then were hated by the patient community you’re trying to be helpful to simply because what you know doesn’t cure them all? We have far bigger enemies than him, please, let’s try to concentrate our anger in only the most productive directions, like on those who directly hold us back.
Seriously people, your anger has made me mad. Take his info for what it’s worth, do yourself a favor and try as much of it as you can. If it doesn’t work for you, move on without any hatred in your heart, like you do for the hundreds of other treatments you have tried that failed. This is a serious disease, and it’s not easy to live with or to treat.
I personally am grateful that we have as many options as we do that are all being published because they have helped even one person. The day I run out of new things to try is the day I run out of hope.
Well said Sunshine.
Amen Sunshine! Attitude is the soil within which our garden grows. The question becomes do we want? Flowers, Food, or Weeds?
hey cort,
i have a friend with fibro and i have M.E. and we both DO NOT have the same symptoms, NO WAY NO HOW. so why do they put them together when they are SO different?
it sure seems like 2 different illnesses to me!
They put them together because at this point they have to really. When you use the Fukuda everyone goes into the same research basket. Check out the Lenny Jason blog just put up – he’s devised algorhythms that can tell if someone fits which definition. Using things like that will tell us who has what problems.
At some point I imagine there will be a number of verified subsets.
Dr. Teitelbaum is a fellow expert with me at Sharecare. He and I have agreed to disagree on some points. I was surprised to see he is now recognizing myofascial pain syndrome as an issue, because this is one of the areas where he disagreed with me.
I do think there is a crisis, and I do think he helps some people, otherwise he would not be so popular. I wish he wouldn’t use the words cure, because as you point out Cort, his own statistics do not bear this conclusion, and it makes some of us who could benefit from his protocol run the other way.
Without a doubt our bodies are in crisis, there are subsets of patients that do improve greatly when adrenal and mitochondrial stress is treated. I personally, have done all these things to no avail, but I cannot knock anyone who has a genuine interest and continues to help and donate proceeds to a valiant effort.
Everyone who knows me, knows I soundly believe that peripheral muscle disease such as seen in MPS (where there is research to show there is an excessive release of acetylcholine released at the neuro-muscular junction) keeps the central nervous system in wind up. Our poor brain doesn’t know which way to go. This is such an important thing to understand because there are treatments for MPS. Let be clear here. This does not mean treating MPS will cure anything. By the time our muscles get to this state, it becomes a matter of maintenance, not resolve. However, if caught early in its course, some people can reverse the effects. That still does not mean it will cure FM or ME/CFS, only help us manage one of the comorbid conditions.
In the meantime, all we can do is try to eat right, avoid contaminants, appreciate that our body works very hard to maintain balance, and that we should respond to it with tender loving care as my dear friendToni Bernhard and I suggest.
In healing and hope, Celeste
oh dr. T just reminded me that since i went to the F&FCenters, every week i COULD NOT remember how i felt from that last week to this week so i just had to copy the same numbers from week to week on their questionaire. NOT GOOD!!!
the dr. there said i have a WEIRD DEMENTIA and i totally agree with that! my friend says that i look at him like WHO ARE YOU when i’m all spaced out! i noticed walking upstairs made my chest area feel strange then exhausted then my brain was GONE!!! then i act very odd saying strange things and wanting to do those things as if i was drunk and not making a good decision!
thats why id don’t want to go out, i might ACT weird and get arrested for doing something NOT right!
HORRIBLE FEELINGS!!!
That is a scary thing to have to deal with! Good luck with it1
In spite of its stupid title I read his book when it came out, maybe thirty years ago? and it helped me greatly, because then, many doctors did not knew about this and seeing most of my symptoms described by a doctor, no less, was a great consolation. Since then I’ve been taking magnesium, lecithin and B complex supplements and I think have helped me a bit. Re sleep, the best I’ve had in these 35 five years of sickness was in a little jungle hotel in Chiapas, Mexico, wich was not in the electric grid and a bit far from town, the turned off their generator at ten p.m. And there was not even phones, my husband and I slept like babies, it was incredible for me to feel that refreshed.
There is a whole field of study regarding electronic pollution. I know enough to know I don’t really know anything about it. What I do know, and this may sound weird – but see if it’s true for you… I find I am able to actually turn down the volume on the TV after about 10 or 11 pm at night, verses the volume level I need to have it set at during daytime. This is true across all stations, all programs, all commercials. It just seems there is far less ‘noise’ in the air enabling me to more clearly hear the TV. I watch a recorded show during the day at say, volume 11, but can hear that same recorded show just as clearly after midnight at volume level 9. Could this be one indication we’re being bombarded with excessive electro-magnetic radiation and waves of all types that connect our modern devices, appliances, and lifestyle?
This is so true. I like it when the world around me goes quiet.
It’s interesting, Cort, that because a few of us expressed a negative opinion about this particular doctor, we are described as being bitter and angry. I have been sick since 1980. I believe that I have remained hopeful and positive over these many decades. Try having CFS back in the day when there wasn’t any name or anyone out there who had heard of anyone being sick with something like this. This was before Lk Tahoe. So, I do not consider myself hopeless or mean-spirited. As far as the person who wrote that they are tried of reading so many negative comments every time you write an article, Cort, I must say, I have read mostly positive things from the CFS community in response to your articles. I think most people are very grateful, including myself, for all the wonderful research that you report on that is going on around the world. Every year I truly believe that this will be the year that we have some new breakthrough that gives us some real answers. The people complaining of my, and others having a negative opinion about Dr. T, seem to be much every bit as judgmental of us for having a differing opinion. Aren’t people allowed to have a dissenting voice anymore? I didn’t write a book; I am not profiting off anyone. Why attack my simple little opinion? That’s all it was. Like him, love him, I don’t care. Give your positive comments about him. I won’t attack you for that.
Well the blog on Dr T has certainly opened up a can of worms. I knew it would to some extent but not to this extent.
I think it’s clear that some people are supporters and other people are really not supporters. I’m glad that some people have derived real benefits from his protocol and I’m not surprised that others have not.
I also think that anyone saying there is a cure or who uses the kind of exuberant language of the ‘Fatigued to Fantastic” title – which was I think a more common way of selling back when Dr. Teitelbaum started – is going to get some grief and not surprisingly so – from some people in this community who have tried so many different things and not seen them work.
of course people are allowed a dissenting voice – but they could express it politely, rather than with anger, jealousy of those who have been helped and trying to belittle others.
It’s frustrating when nothing helps but perhaps that anger and bitterness is part of what prevents you finding any therapy that will help. Anger will increase your cortisol levels and that may be one of the things that keeps us ill. I suggest phosphorylated serine and if you can’t take magnesium any other way spray some oil on your skin.
You aren’t the only person to have had problems for years, the doctor had himself.
Well said, tatt.
The problem is not expressing a dissenting opinion. The problem is doing it in a vitriolic way. There are many comments here saying Dr. Teitelbaum is just in it for the money (from people who don’t know him personally), that his protocol won’t help anyone significantly (from people who never tried it), expressing anger that Cort is even covering this, asserting that they would never go to see this man and generally discouraging others from doing so, and expressing anger that work like Dr. Teitelbaum’s even gets attention or coverage at all in conferences.
When people make such comments, which are made with angry speech and without any personal knowledge of the doctor or having earnestly tried what’s in his book, of course it is going to offend and anger those in the patient community who actually have tried it, found it to be helpful, and find the man to be sincere (if a bit socially misguided). That anger feels like it is directed at us. When you say essentially he is a charlatan, that feels like you are calling us stupid for seeking him out and paying for what he has to offer. When people angrily state that his work should not be given coverage in the M.E. community, they are stating that they want voices like mine to be silenced, that our illness does not matter, that they do not care that we have gotten even a modicum better, that they are angry they themselves are not better and want to keep everyone else from accessing such treatments that may not be cures but only symptom relief.
Why act so innocent? Your comments and others were hardly just dissenting opinions. They are direct attacks on Dr. Teitelbaum, on Cort’s choice to cover him, and thus on any patients who have improved as a result of his work. Maybe you didn’t realize it when you posted because you were overwhelmed by your own feelings (we all know what it’s like to be angry about something related to this disease), but it’s not that much of a leap after you calm down to see why vitriolic negative comments might spark vitriol from those you are attacking in return.
I would think in general we all wish each other well here. We should try to post when we are not so overwhelmed by feelings that we cannot show that in our comments. We all deserve a supportive community that carefully considers each treatment available, and does not judge others for trying something that does not fit well for us personally. We also should refrain from personally attacking those who try to help the M.E. community, unless we have first-hand indisputable knowledge that is leading us to smear their character publicly. Otherwise you are slandering an innocent person, insulting those patients who are helped by that person, and discouraging new patients from trying that person’s treatments and potentially seeing improvement in their own tortured lives. That is both unhelpful, and baseless as it is not even predicated on having tried the protocol in earnest personally.
Cort, I appreciate the outstanding work you do on behalf of CFS/ME patients. However, I was surprised that you chose to send us an article in which Dr. Tietelbaum promotes his treatment remedies for CFS.
On May 4, 2012 the Chicago Tribune published an article which said, in part:
“A commercial website for people suffering from symptoms of chronic fatigue syndrome and fibromyalgia is rife with numerous illegal and misleading treatment claims, according to a recent warning letter sent to Dr. Jacob Teitelbaum by the U.S. Food and Drug Administration. Teitelbaum, the medical director of the national Fibromyalgia and Fatigue Centers and author of several books on the topic, including ‘From Fatigued to Fantastic!’ also unlawfully used his Facebook account to promote his products for disease treatment and prevention, the FDA said in the three-page letter.”
In my opinion, Dr. Teitelbaum is not a reliable, or honest source, for treatment of our illness.
I’m just going to disagree. I know of several people who have done very well on Dr. Teitelbaum’s protocol, and again, I think ‘From Fatigued to Fantastic’ is an impressive book. Do people not benefit as well? Absolutely, but I think you can go to any ME/CFS expert and find plenty of people who never benefited or who even got worse.
I’m not particularly a fan of the FDA going after doctors who propose alternative treatments which haven’t received and never will receive study.
I have to admit I too am a bit disappointed to see that Cort has published this article. I hold Cort in high esteem and to see his stamp of approval on Dr. Teitelbaum is dismaying. He may have helped some people, but he is clearly a salesman and an opportunist first. He walks the line and sometimes crosses over into unethical – and that for me, as someone who has been sick and at times vulnerable to this sort of sales talk of curing (not to mention and calling it “chronic fatigue”), is just plain unacceptable, and disqualifies him from being covered by a very good site such as this one. No anger here, just expressing my view.
Ouch!
not to pile on — ’cause I love what you do here Cort, but, I have to agree with Sheila. this site has always seemed to have had it roots in ethics and science. and Teitelbaum doesn’t come up to your level.
I’m an ethics first kinda guy. and i believe that good science comes from an ethical and honest approach. having read your excellent articles for so long, i think you feel that way too. Teitelbaum just isn’t worthy of being sanctioned by you – imo. 🙂
I don’t think of him as being unethical but I understand that other people have had different experiences that have lead them to feel otherwise. Thanks for letting me know. I appreciate your nice words about the site!
If there are patients who are seriously ill and officially diagnosed with M.E. who have been helped by Teitelbaum or ANY practitioner or protocol, why would we knowingly deprive patients in our own community of that knowledge? Are we a community of sadists and masochists? I have a definitive diagnosis, I am only of the more ill people in this community (bedridden most of the time), and I have been helped by Teitelbaum’s book significantly. Not cured by any means, but my suffering has been significantly lessened.
I am glad this was covered, and the only thing I regret is the onslaught of comments after the article that would certainly deter me from reading his book or trying his protocol if I were a new patient. How sad that we work so hard to deprive others of the chance to get better, rather than on supporting a wide range of knowledge within our community. Why should we judge any patient’s choice of treatment? Each of us simply wants to get better, and I’m sorry that I am not among the ‘elite’ here but I certainly am not too snobby to try something that can help me even if it’s not a cure or does not have extensive meticulous studies behind it. It helps, I can access it, and that’s good enough for me. And yeah, it angers me that there are people in our community who would deliberately try to deprive me of that knowledge that would make me feel better and suffer less while I wait for a cure. Shame on you!
one day ……. we might find that this bunch of doctors and researchers collectively assist to bring easy dagnosis and relief to ALL the subsets and their multitude of symptoms – what a task they have chosen – Thankyou
there is a place for all of the information
what works for me may not for you
best of luck to all x
I haven’t read dr. T’s book but I have read other blogs or been on fora where the general tone was much more negative than here. I thank Cort’s inspiration for that.
Maybe we should try to look at the subject of anger in ME/CFS with as much openness as we can muster … and not judge others, which is difficult … and not patronize, which is also difficult sometimes.
Yep 🙂
Wow!!
I’m relatively new to the complete debilitation of the disease and so my journey into treatments has just begun. (I’ve been sick for 15 years but it only got truly debilitating (and diagnosed) in the last 3… yes I do consider myself blessed in that.)
I was watching Dr. Ts video feeling excited… elated actually… that someone seemed to have answers. I’m making notes on things to try, things to talk to my doctor about. I was even going to ask her to watch the video.
Then I read all the comments… YIKES!!
My elation has turned to sadness. Now I’m thinking… why bother?!
Many of the posts here are extremely frightening to someone just beginning the journey, just trying to find the things that may help them. I’m so very, very discouraged.
I believe I am realistic in that I don’t believe there is a cure (yet) but I have to have hope that something may help, may make things better and a lot of things he said in this video seemed to make sense.
As a newbie, I just ask that you keep in mind the audience for your comments. Some of us are still learning and this was just incredibly frightening and discouraging. I think it would be more helpful if you tell us your personal successes and personal failures rather than attacking any one person.
I am understanding to the discouragement, frustration and out and out hatred of this disease and just how hopeless it can feel sometimes so I do have appreciation for the emotion behind the comments. Still just feeling disheartened.
Here’s what I think you should glean from this discussion.
There are some people who got quite a bit of help from Fatigued to Fantastic and Dr. Teitelbaum’s approach. Other people did not.
That’s it!
The rest is background noise 🙂
It might help to know that this is also an unusually heated discussion and Dr. Teitelbaum is an unusually polariizing figure. If it was another ME/CFS expert the conversation would be much mellower.
It’s not always this way. It’s not usually this way. This is unusual.
Good luck on your search!
Believe in yourself, T. Ryan! Listen to your body. Have faith that you will discover what you need to know when the timing is right for you. Other people’s experience is not -your- experience… Give yourself every opportunity to attain your best health possible. It’s ok to get discouraged, just not healthy to -stay- discouraged 🙂
I get that a lot of people don’t like Teitelbaum (and don’t like seeing him on the website :)) but I want to plug one thing he’s doing and that’s the ME/CFS and FM doctors network to get doctors talking and learning from each other. He was quite right I’m sure when he said there is so much information out there that it’s impossible for any doctor to be up on all of the possibilities.
So good for Dr. Teitelbaum for organizing that. I hope many ME/CFS and FM experts are on there.
Thank you, Cort, for covering all sides of this very complex and frustrating illness.
Cort,
I’m glad you published this! I have been curious about him, but I haven’t read his book because I thought he sounded like a snake oil salesman. After watching the video, I don’t think he is selling snake oil, just supplements. I am always suspicious when a doctor sells his own supplements! (conflict of interest?).
When he said, as if it were a well-known fact, that CFS is caused by the hypothalamus blowing out, I became very wary. If he had said it was his theory, it would have been more honest. So, his whole treatment plan could be based on an unproven theory. Not that it’s a bad treatment plan. As others have said, some of it may help.
I appreciate that he is helping to educate physicians and enhance awareness of CFS, but I hate that he said we are all over-achievers with low self esteem who cannot say ‘no’. That’s just great – now it’s my fault I have CFS because of a serious personality flaw. I feel better now.
I enjoy the controversial topics, because they generate lots of discussion!
They certainly do generate lots of discussion 🙂
I think this is a fabulous conversation generated by this video. Thank you. Like everything, his offering is a mixed bag, and we happen of necessity to be brilliant sifters (thank goodness) of info–what is useful, what is nothing, and what is hurtful. we are the ultimate curators. 🙂 I am grateful for Teitelbaum for trying. The rub? The smack of arrogance, especially at the end. There ARE unanswered questions and NONE of us has this thing figured out just yet so slick and so easy. That said, for the newbies and their families, this is good info and a decent summary. and i’ll take bits of wisdom and help wherever i find them. if nothing else, i can watch this whole video and say, Yup, already knew that. Here’s to you guys, fellow curators.
Tried Dr T’s approach. It is helpful to know that hormones are often severely disrupted in ME/CFS and to look for things like low RBC magnesium. However, for severely ill patients, his “one size fits all” cheerleading approach is of limited benefit, and when it fails, causes bitterness. My main stumbling point when reading his book was his belief in NAET, which if you look into it, is sheer voodoo. Sorry, but I cannot credit “muscle testing” (kinesiology) as a legitimate medical procedure. Don’t care if his wife practices it.
I have recovered from chronic fatigue syndrome and fibromylagia. Beleive me I understand the pain, the frustration, insomnia, brain fog and feeling like I had the drop-dead flu. Walking across the strret was like walking five miles. I remember telling my doctor after nearly five years of agony, “I either want to get better or I want to die.”
Candida (among other things) can be a major player in chronic fatigue. In my case that was true.
After making the rounds of doctors trying to find help, I finally found a doctor (now retired) who put me on diflucan. It was a major break-through but not the total answer. Now, I would take Neem pills for candida, because diflucan can be so hard on the kidneys.
I drastically changed my diet, and I mean drastically to an alkaline diet.. Most people are not willing to change their diet that much. I ate no sugar, no fruit (except grapefruit, lemons, lime, avocados, and tomatoes). I drank two to three liters of a green drink (similar to AlkaVision and added drops of Sodium chlorite to the drinks). I juiced green drinks of cucumber, spinach, kale, and celery. I did not eat any red meat, dairy, or grains. I ate millet, quinoa, brown rice, a little fish, rice crackers, almond milk, nuts that had been soaked overnight, and all kinds of vegetables–mainly green vegetables.
I tested my urine every morning to check my pH. Within two weeks I started to feel better, not well, but more.enegy. Within a month i was jumping on a mini-tramp.
I took epsom salt baths and went to a suana at a spa to sweat out toxins in my bldy. I later did colon cleanse. I took supplements. I worked on changing my stinking thinking. Within three months I no longer was among the living dead.
I love Dr. Teitebaum. I love his candida questionnaire. You can pull a questionnaire up on line.
It has been over 20 years since I recovered. If I had it again I would do Emotion/Body Code and medical hypnosis, in addition to the alkaline diet and supplents.
I wrote my doctoral dissertation on an alkaline diet and chronic fatigue. My hope and prayer is that everyone can find the answer to recover or improve their health.
I am a therapist and know that anger and trapped emotiions can increase pain.
Kindest regards,
Hey Patty thank you for that overview! I’ve been filtering through all of this info/discussion and have vacillated quite a lot regarding Dr T.
I am also an mental health therapist and wondered if you’ve ever heard of Internal Family Systems (IFS)? I’ve been studying trauma for some time now and have found IFS to be an amazing modality. As it has been said, the body keeps the score. I digress, somewhat, but truly. Thank you for the synopsis.
The only thing that ever worked for me and still does is Adderall or Vyvanse. I had Viral Meningitis years ago and never got well. Eventually that diagnosis evolved into ME/CFS. The docs used every pill out there to stop pain, control pain, manage pain, improve sleep, induce sleep but nothing worked. I remained in bed unable to withstand a trip the grocery store or a family dinner. I was sent to pain clinics who drugged me out of my mind. It was a nightmare to say the least. I did some research online and found that as a last dig effort some people and their doctors were using ADHD meds. My doctor agreed after we exhausted everything else, it took almost a year to do that. I know, its an amphetamine. But there is a time and a place for appropriate use. I have to put my morning dose by the bed so that I can take it 15 minutes before I get up in the morning and then I take an afternoon dose (Adderall-it wears off and is cheaper, Vyvanse-last longer and is more expensive) in order to be able to help with dinner and kids homework. NOTHING compares to the relief I have now. I know I can join my family for meals and events. It has restored my life. As for sleep, I can often take the adderall and even fall asleep after taking it. Might prove real ADD on my part but it does happen. My mind slows down and Im focused. I am also focused on my activities throughout the day. I am working again. Since my days are active, I am appropriately tired at night. Occasionally, I use a sleep aid like valium or just a benedry. (benedryl has to be the clear capsule because the pink ones make me feel restless leg syndrome and I toss and turn rather than sleep. Benedryl can also cause depression so limit that one) In the beginning I did feel a little speedy and chatty but that wears off and it simply becomes a way to exist after a while. We tried stopping it to check for the real need or if improvement had come in some other way bc I was exercising with it and the depression lifted but I ended up back in bed for a month. ADHD runs in the family so it could be that for me. However, it has given me my life back. Im a mother and a wife. I stopped all other meds, even pain meds, even tylenol which I believe causes rebound pain. I hope this helps someone out there. Your doc may hesitate at first, like mine did, but after nothing else works, mine was really happy to find this answer with me. I got online and printed out documents stating the use and effects of these meds for ME/CFS. I KNOW how desperate some of you are, all of you are. I was as well. I honestly don’t care what the cause is now. I know what works for me. It has helped many friends of mine, as well, whose docs began prescribing for them. You will not need an antidepressant or pain pills with this med on board. Its a miracle for this condition. Chronic, ongoinge never ending fatigue is a very good reason to use an amphetamine. You’ll need to limit caffeine intake in all forms bc it may cause heart to race a little and do not double dose. You need to be careful and care for yourself with this medication. These are very old meds and have little to no side effects except weight loss and a days worth of living and activity, a real nights sleep and a feeling of well being. I will tell you that in the beginning as you find the right dose for you, mine had to start low and increase some but not too high, 20mg 2 x day Adderall, you may find yourself feeling elated and chatty. Thats ok. At least you’re not dead. That will wear off. Some people become somewhat emotional in the beginning, thats ok, at least you’re not dead. That will wear off. Your body will adjust. You won’t need to keep increasing dose though. Once you find a good level for you and what you need in your life stay right there. High doses of amphetamines are what gives it a bad name. So, enjoy the energy and feelings of normalcy, exercise (because you will be able to now, swimming is a good start, or walking), limit caffeine (absolutely no Mountain Dew. It has double the caffeine) Try some hot tea if you need something warm as a drink), enjoy the weight loss because CFS brings on extra pounds, it will just naturally come off and in 6 months you’ll be shocked at your skinny self. I hope more medical research can go into these medications as a relief because, for now, there is no other. There are a million guesses out there in research format but no answers as to what this is. Believe me I went from John Hopkins to Boulder to Birmingham seeking answers. I found my own answer online. Research these meds related to CFS/ME. Best wishes to all. I know how you feel. Blessings for improved health and life. It will not ‘cure’ this condition but enable you to live with it and live in a way that you forgot was possible. I can actually enjoy taking a nice deep breath and feeling good again. At peace even. A
Thanks Allyssa for an the information. I imagine that you’re not eligible for Synergy trial which is combining supplements with Ritalin. If you don’t know about it put Synergy into the search box. You might find those supplements beneficial – they helped boost the effectiveness of Ritalin in his group.
Alyssa I agree, too, adder all has helped me too! air helps the depression and the fatigue! It gives you the ability to take a shower, which is hard to do with the chronic fatigue! Also I take doxipen, and it really helps with the chronic pain, and the neuropathy pain. I’ve had fibromyalgia, for over 25 years! I didn’t find any significant help in His book! It just made me more fustrated, and I think it also gives false hope! It makes me so sad, to think of everyone, having to go thru this journey!
In the past 1987, I was working in Germany, fond a very old book, handwritten, about old medications. I was wondering about one peticuallary recepy; it couldn’t be true….but the peoplle in the past where not stupied. Much later I heared a story of my parents about a woman( believe it ornot, but she had all the simthoms of ME/cfs) She past away a long time ago. She tried many recepy’s The one I read about was finally the real sulotion. In her time they caled it a kind of anemia(…). In 2001 I made the same recepy again, not aesy. Result by me bad headache fully gone tinnitus didn’t diapear. Sleping problems no more(!!!!) In the morning full of energie, at evening tired also a regular life. A grocery man from Rotterdam told me; The time you take away the vegables from the land is important…I have to agree. But today I take my medication from somthing else. (only 4- 12 times a year is enough) I helped a few people, natur is not popular I hope someone/everyone will try my material. As long as possible, but the 50 first people get it for free, accept the porto. This have to be sended in frozen condition. If you live in Holland, it’s more easier Harry
Well I know why I have it. Never recovered my energy after a severe illness that they were never able to diagnose. Then accepted “push” of gaseous IV ozone that destroyed my circulatory system and I was in a wheelchair for a year. Only because I have an IQ am I even alive. However —- I also got “floxed.” Cannot take epsom salt baths because my water is fluoridated; diflucan is another Rx that contains fluoride. “Fixing” lack of sleep with drugs to me seems not fixing cause. My free T4 is fine; it is my free T3 that is low. So — I continue to continue and don’t see any hope here. I’m lucky to lead a reasonable life as long as I don’t overdo it.
Thats the cause of my cfs too. Flox and so a low t3. I have an appointment next year at the Nuklearmed to get extra t3 (Thybon). I hope it will make a different.
We will never get the toxic out off our system. 🙁