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Category: +Audience

About Quinoa; Mistakes made on T3-only; Thyroid Patients and West Nile Virus

“WHAT IS THAT??”

As a thyroid patient who went to hell and back thanks to 20 years of a lousy treatment by allopathic medicine, I care about my good health and what I eat. So I attempt to balance my eating sins. And when I was recently at a salad bar, I couldn’t figure out what a particular bowl of food was, sitting next to mixtures of fruit, pastas, etc.

It looked like “frog eye salad”, which is made up of teeny tiny b-b size pasta and sweet fruits. But this had tomatoes in it. And the small round things had a thin white line around them. Were they fish eggs??

Turns out its a high protein, higher fiber whole grain called Quinoa (pronounced keen-wa), and is loaded with nutrients, including the minerals iron, zinc, and selenium, plus vitamin E and lysine, and all essential amino acids. I got a scoop and I was impressed.

And voila….if you need to be gluten-free, this grain gets the mark! I plan on buying some at my local health food store for an occasional hot breakfast cereal (as I suspect my husband would do better avoiding gluten thanks to frequent digestive issues), besides strongly recommend it to my husband’s niece, who badly needs to go gluten-free to lower her high inflammation levels.

Don’t feel the need to avoid gluten?? This still looks like a great grain and food to become familiar with, which I’m going to do! But a word of warning: it’s not low carb. So like any carb you intake, you’ll want to eat it in moderation.

KEY MISTAKES IF YOU ARE ON T3-ONLY, says a lot of patient experience

Though ten years of strong patient experiences show that natural desiccated thyroid gives the best results for thyroid disease, some thyroid patients have to be, or choose to be, on T3-only. It’s definitely a far better treatment than the lousy T4-only treatment with Synthroid and other brands.

And along the way, we’ve figured out some mistakes we may be making when using T3-only:

  1. Dosing rigidly every certain amount of hours When patients were first learning about using T3-only (which requires more multi-dosing at first than does natural desiccated thyroid), we thought it was a good idea to dose rigidly about every 4-5 hours or so, thinking that T3 would peak about 4 hours after taking the first dose, then make a fall, and you’d then need to replenish your levels. We were wrong with that rigidity.It can be very individual when one needs a dose of T3. Some might need another dose of T3 in three hours after taking the first one due to a higher metabolism. So if they go longer, they put themselves in an increasing hypothyroid state. Another person might be a slow metabolizer and only need their next dose in 5 or 6 hours. So if you take it too soon, you put yourself in the direction of a hyper state.Turns out you need to be dosing T3 when your body tells you it’s time you need it! How to know? Your signs and symptoms. Look for clues that you need your next dose, like a rising heartrate or blood pressure, depression, fatigue, or any hypothyroid symptom unique to you. Notate that on paper, then you’ll know to take your T3 right before that time the next day. It might take a few days of experimenting to figure out when your ideal dosing times are.
  2. Multi-dosing T3 too many times during the day As patients, we used to think that we need to dose T3 up to four to fives times a day in smaller doses. But with our new knowledge about T3, several patients have noted noted that moving dosing to 2-3 times a day, and thus in larger amounts each time, has resulted in better treatment of their hypothyroid state, especially with better cortisol levels.
  3. Thinking that different brands of T3 are equal Unfortunately, some brands of T3 are weaker than others. And occasionally, some batches of a better brand may be bad due to heat exposure. Generally, patients have reported Cytomel to be of a quality and consistent strength. Cynomel has been reported as equal in strength, but lately, patients have found some batches to be weak and are reporting this to the company. UK’s Liothyronine by Goldshield has been reported by patients as weaker in strength all the time. All in all, Cytomel has received the most positive scores.

Using T3 all day while doing the T3 Circadian Method (T3CM) for your proven adrenal fatigue?? As your adrenals kick back in, you may notice that you 1) need to space your T3 farther apart, and 2) that you will need less T3.

WEST NILE VIRUS IS BACK LIKE A VENGEANCE: WHAT YOU AS A THYROID PATIENT SHOULD BE DOING!

Found out that a cousin of mine, who’s a father of two young children, found himself with West Nile Virus several days ago. I got West Nile about 5 years ago, as well. For many of us, it’s like the WORST flu you ever had, and you can take a few weeks to get over your post-illness weakness.

And since having a compromised immune system (as struggling hypothyroid/adrenal patients can have) makes one more vulnerable to the virus effects, I can see it being imperative to be on immune-supportive herbs right now, besides putting on some kind of mosquito repellant of your choice. I also read about Lomatium root, which is supposedly very anti-viral. I would talk to your local health food/supplement store for recommendations.

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Has Armour gone back to its pre-reformulation? And 5-HTP is pretty remarkable…

Though this page was originally written in 2012 about Armour and 5-htp, it’s been updated to the present day and time.

It’s only a handful of comments here or there in patient groups, and I’ve gotten two emails as well. But there are reports that recent bottles of Armour desiccated thyroid have pills which are performing just like they did before the unappreciated reformulation of 2009. i.e. they are softer again and can be done sublingually, and may be back to more dextrose and less cellulose.

Said one patient who contacted me via email: “It’s interesting what I read in the thyroid group the other day that her pills were back to being soft. But typical condescending Forest Labs who never said a word in 2009 to the most informed group of patients in the world, and haven’t communicated to us directly once again if it really has changed.”

So, if it’s true, there may be a phase of figuring out what you get: the hard ones that patients found HAVE to be chewed up to be the most effective, or the return of the softer ones which could be done sublingually. I’d be curious to know which pharmacies and in which city/state are giving out Armour tablets that are softer.

UPDATE: Forest Labs, the former makers of Armour, was bought out by Activas in 2014, then the price of Armour became the highest priced NDT around. And for many, it wasn’t working like it used to. But some still do well on it, paying the highest price. Learn from this page: https://stopthethyroidmadness.com/options-for-thyroid-treatment

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5-HTP can be miraculous against depression, plus can help troubled sleep patterns

When I went into full menopause, one issue I noticed was out-of-the-blue was afternoon depression, in spite of being optimal on Natural Desiccated Thyroid. Bottomed-out female hormones can be problematic until I can correct them. And I found something that worked to completely remove the afternoon depression with the FIRST day of use: 5-HTP. I was shocked.

Turns out that menopause can also mean low levels of serotonin–a brain transmitter that affects your mood positively. Your over-the-counter 5-HTP supplement (which comes from the seeds of the African plant Griffonia simplicifolia) is a precursor of trytophan, the amino acid responsible for making serotonin and melatonin. And lo and behold, what do many prescription anti-depressives, such as Selective serotonin reuptake inhibitors (SSRI) meds, do?? They increase the bioavailability of serotonin! But why put up with the side-effects when 5-HTP is natural and has so few, I decided!!

How much? 100 mg did the trick for me, once a day. But others report needing 200 or 300 mg. I started on too much–had dizziness with starting on 200 mg. Found out the hard way that 100 mg was enough for the time being until I coud better treat my female hormonal issue. I’ve read where some only start on 50 mg.

For better sleep, studies have shown that 5-HTP outright will improve your sleep due to increasing melatonin. Research has reported a lengthening and deepening of their REM period of sleep–the deep sleep–and without increasing the amount of time they sleep. It also seems to smooth any ups and downs with sleeping. Some research shows it can take several weeks, but I figure that can be individual.

There’s even anecdotal evidence that taking 5-HTP has helped drinkers avoid the bottle. i.e. if someone drinks to self-medicate against depression, 5-HTP could help.

There are definite cautions with 5-HTP! i.e. it’s NOT recommended to take it with anti-depressants or any seratonin-raising drug, as together one could raise their serotonin levels too high. A lot of different experiences with 5-HTP can be found here. As always, talk to your doctor about using it or not. It may be for only short-term use.

NOTE ABOUT DEPRESSION: For hypothyroid patients, especially those still stuck on T4-only like Synthroid, depression is pretty common due to inadequate levels of T3. Once you get on Natural Desiccated Thyroid, as well as correct any potential low iron or low cortisol issues, you may find that depression is kicked to the wind!

As intellectually stated by Eric Fliers from the Department of Endocrinology in Amsterdam, “triiodothyronine (T3) is also capable of increasing serotonergic neurotransmission by desensitization of inhibitory 5-HT1a autoreceptors in the raphe nucleus, thus disinhibiting cortical and hippocampal serotonin release, and by increasing cortical 5-HT2 receptor sensitivity, further increasing 5-HT neurotransmission.”

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Two newer pages on STTM as of 2012, and updated to today:

  1. Adaptogens: read how certain plant and root substances can help you cope better with stress, here.
  2. Graves Disease: never thought I’d have a page on STTM about it, but enough patients have asked that it’s now here. Besides, since many Graves patients become hypothyroid, it’s good for them be included on a site that teaches what patients have learned about far better thyroid treatment, which is NOT T4-only.
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New to this website? Read about:
  1. Desiccated Natural Thyroid as the treatment with the best results
  2. Why T4-only meds like Synthroid aren’t doing the job for all too many
  3. How many thyroid patients fall into sluggish adrenal function aka adrenal fatigue
  4. How you can treat low cortisol without the use of HC
  5. What patients have learned
  6. Mistakes patients make in their treatment
And get the REVISED STTM BOOK for more details and ease of learning about what patients have learned.

 

 

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Why I insist we need to fire most of our doctors! i.e. mainstream medicine is keeping us sick!

The following is a Guest Blog Post by thyroid patient N.P who is active on the main Stop the Thyroid Madness (STTM) Facebook group.

Hi. My name is N.P. In March of 2012, I started a post on the main STTM Facebook group page with the topic “How many doctors have you fired?”. It not only ended up with over 1000 replies, but most were from exasperated and emotional patients about their terrible experiences with doctors. I even had a few who thought it didn’t belong on Janie’s site. I’m thrilled to be known for that, actually. Anything to entertain. Now…if you want my practical editorial of why my post has gone over the 1,000 comment mark, read on.

After 9 long years of a “wrong diagnosis” followed by wrong treatment strategies and all-too-many doctors, it took a psychiatrist to diagnose my Hashimoto’s condition. After going gluten-free to manage the Hashimoto’s disease, the same psychiatrist was the one who suggested I had Celiac Disease as well. What is wrong with this picture? Why did nine years of doctors never do their jobs??? Why did they let me suffer so?

I went through the various stages of emotion over the years, from being frustrated by mainstream medicine’s poor understanding of my health, to the annoyance of not having answers, to the embarrassment of never having good explanations for my friends and loved ones. And when the only way I got answers was through Amazon, STTM/Janie Bowthorpe, Facebook and my psychiatrist, I had finally reached this familiar stage: cynicism. There’s not much left after that except for throwing in some humor. That’s why I started the post.

I sensed when I started the post that I was representative of many. Clearly, the post struck a nerve with a lot of patients and has been a great outlet for people needing to get their horror stories and frustrations off their chests. For those who are feeling desperate, as I have and still sometimes do, there’s always a place for you on my post.

“Yeah, It’s all wrong man…we shouldn’t even be up here!”

The post was originally meant to give people a humorous way to vent their frustrations over the outrageously inept thyroid care that they’ve received. I quickly saw the fun in having it morph into a vehicle to ridicule all doctors who’ve told their thyroid patients “Your labs are normal.” Yes, I have an ax to grind with mainstream medicine and feel my post is fair game.

Mainstream medicine brought it on themselves by the way they’ve conducted themselves. It’s much like the airlines have done the same with seats that force your knees up to your chin and allow the bald head in the seat in front of you to be in your face. They think it is OK but it is NOT OK. The many posts about the experiences of patients with doctors, and being stranger than fiction, proves my point.

In addition, I felt I was representative of many people who’ve gone through what I did over 9 years and just needed a place to vent and release their years of frustration through a little bit of humor. Can you believe that a doctor with 20+ years of education and training on how to heal people, and who literally holds the patient’s life in their hands, would rely solely on a lab report? Then, they send the patient on their way by saying “there’s nothing else to do — it must be in your head.” They call themselves professionals? For shame. They deserve to be ridiculed.

I’m shocked by the frightening, life-altering treatment recommendations from doctors who’ve stopped trying to heal when they say, “Your labs are normal.” If you haven’t read my latest summary, here’s a few. Incompetent doctors have recommended hysterectomies, ECT , surgeries and one patient was told she should check into an in-patient psych facility. The frighteningly outrageous part of this is that these doctors, who lull us into complacency because of their titles and stature in society are in a place in our lives where they can HARM US!!! And they have harmed many. I certainly feel harmed.

And the Band Plays on……………………..

What I always knew, but would never consciously admit until I started the post, was that the “only in America” pop culture bafoonery we read about in the newspaper also existed in the medical profession. The most intelligent people can also be the most dumb. A doctor tells a patient that “your bones are probably dissolving” or that Natural Desiccated Thyroid was “made by a meat company that went out of business 10 – 15 years ago” or that “since a cause of the depression can’t be found , you might as well get a hysterectomy.” Crazier than fiction.

So, the profession that is supposed to heal us is keeping us sick. Rather than letting one of the most basic laws of humanity (which is to help others) to passionately drive them to use their training and common sense to solve our problems, they would rather dismiss any other proposed treatment strategies that might work and let us stay miserable until someone in an ivory tower tells them to do otherwise.

You’d think I’d be done after the statement above, but it gets worse.

Not only is mainstream medicine keeping us sick, but many doctors are insulting us as they do so. For example, the complexities of thyroid problems and its related conditions cause many patients to gain weight. What do many doctors do? They blame the victim. “It’s your fault you are fat “ is what they mean when they tell you to go to Weight Watchers or to start eating spinach (It’s true, a doc actually said that to a patient). They are thinking that the patient is not educated in how to eat right or just doesn’t have the motivation. I’m one who has heard a variation of this before. Outrageous. The one person you would expect some empathy and compassion from does more harm and their attitude keeps us sick.

Some of you have decided to do something constructive with the problem, and through different initiatives, are demanding of the institutions that oversee thyroid treatment better care. I applaud you for that. Me, I’m the one who will keep insisting on firing doctors until we get well, get their attention, or both.

Fire a bad doctor for me. Add it to my post on the main STTM Facebook page!

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*To read Janie’s 20-year agony thanks to uninformed doctors, read the detailed Introduction in the revised STTM book.

* See a collection of what many misguided doctors have said to patients over the years.

P.S. And thank you to the growing body of doctors who are LISTENING to ten years of patient experience as outlined on the STTM website and with more detail in the STTM book, all which underscores that

  1. The TSH lab test should ONLY be used to discern pituitary function (NOT to diagnose or treat by)
  2. There are far better labs that need attention.
  3. It’s “where” a lab result falls that counts, not the fact that it comes within a so-called normal range
  4. Natural Desiccated Thyroid changes lives.
  5. Sluggish adrenal function is very real and needs the right treatment.
  6. The patient-to-patient Stop the Thyroid Madness book needs to be in every doctor’s office for reference. Patients really DO know what they are talking about.
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New chemical analysis showing important difference between NDT and T4-only!

I found this fascinating…and I think you will, too.

I got an email from Peter Guagliano, the owner of the website thyroid-s.com. And he directed me his latest post titled “Natural Desiccated Thyroid and Synthetic are NOT the same”.

But this wasn’t the basic information that we all know i.e. comparing a single synthetic hormone to all five natural desiccated thyroid, which makes the latter wonderful.

Instead, it was about a bio-analytical chemist who decided to test synthetic T3 (Cynomel and Cynoplus) as well as the Thailand-made Natural Desiccated Thyroid (NDT) called Thyroid-S, by extracting each tablet with methanol, then diluting and injecting them on an LC/MS system–a sensitive instrument used to detect and identify compounds and molecules in a substance.

And what he discovered and reported is that the thyroid hormones of NDT are tightly bound with thyroglobulin, a large iodine-containing protein….whereas synthetics are bound by nothing. i.e. synthetic hormones are exposed; NDT hormones are protected (until they are released by your digestion). The diagram on this blog post gives you a powerful visual of this reality, but specifically in comparing natural desiccated thyroid with synthetic T4-only. You will see the large mass of thyroglobulin on the left, each containing either T4, T3, T2, T1 or calcitonin within. Then the tiny synthetic hormone on the right, alone.

But is that bad NOT be bound by thyroglobulin?? Possibly yes in the opinion of Peter. As Peter explained: “The [exposed] synthetics might be affected by stomach acids in different ways in different people. Low acid, high acid, various digestive and pancreatic enzymes in varying amounts, bacteria/flora in the stomach and small intestine, all kinds of possibilities here which would vary by the person.” And, he says, that can mean instability!

Peter continues: “Perhaps the thyroglobulin in NDT (and completely missing in the synthetics) is absorbed, or necessary, or utilized, or forms other products during digestion that could affect blood levels of various substances, numerous carrier proteins for example, thereby affecting the results obtained.” And he concludes: “The NDT hormones are bound to thyroglobulin and not available for reaction or breakdown until after they first digested (from Janie: which saliva begins, by the way, even in your mouth). This would be a more stable compound.” His original post is here.

A side note about thyroglobulin and iodine: The protein Thyroglobulin takes up a lot of space in your thyroid with the purpose of taking ahold of iodine and storing it to produce thyroid hormones. That purpose alone tells you how important it is to have healthy levels of the nutrient iodine. And each molecule of thyroglobulin has just over 100 sites where the iodine can take ahold along with the assistance of thyroid peroxidase (TPO) and hydrogen peroxide. When you are iodine deficient, it’s been noted that your thyroglobulin will increase, which is why you can see a bulge in front of your neck–also called a goiter. (Even taking too much iodine supplementation can cause this increase, which can block thyroid hormone production).

**Enjoy more scientifically technical information about thyroglobulin? Go here.

**To read about the process of making porcine-derived NDT via thyroglobulin, go here.

**To know more details about Natural Desiccated Thyroid–its history, the breakdown of the hormones, and how patients dose it, see Chapter 3 in the revised STTM book, here.

**To read how T4-only is only a reverse mirror image of the real thing, read my blog post from May 10, 2012.

Whether these findings are completely correct or not, patients simply know from ten years of experience that NDT has been giving them far better results than T4-only…and even those on T3-only who moved to NDT reported they liked the results even more. It’s all important patient-to-patient information.

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Hypothyroidism, Insulin resistance and Metformin: read this brilliant information!

This interesting page has been updated to the present day and time. Enjoy!

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The following insightful post was written by UK hypothyroid patient Sarah Wilson.

My daughter (25) has epilepsy. What’s that got to do with being hypothyroid and Natural Thyroid Hormones (NTH. also known as Natural Desiccated Thyroid or NDT)? Quite a lot, by the look of things.

My daughter’s epilepsy is triggered by unstable blood sugars. And since taking Metformin (medication to improve blood sugar control), she has significantly reduced the number of seizures. Being a good hypothyroid Tiger-mother, I have been doing mega amounts of research and we got to the Metformin approach through reading hundreds of academic medical journals. What I found along the way got me thinking about NTH and Hypothyroidism.

I have a strong hunch, backed up by some meaty academic evidence, that when patients develop hypothyroid symptoms, they are actually becoming insulin resistant. There are many symptoms in common between women with PCOS and hypothyroidism–the hair loss, the weight gain, et al. http://insulinhub.hubpages.com/hub/PCOS-and-Hypothyroidism A hypothyroid person’s body thinks it is going into starvation mode and so, to preserve resources and prolong life, the metabolism changes. If hypothyroid is prolonged or pronounced, then it is entirely feasible that even with the reintroduction of thyroid hormones, that chemical preservation mode becomes permanent. To get back to normal, they need a super “jump-start” to kick the metabolism back into action. The super-kick start is effected through something called AMPK, which is known as the “master metabolic regulating enzyme.” http://en.wikipedia.org/wiki/AMP-activated_protein_kinase

Guess what? This is exactly what happens to Diabetes patients when Metformin is introduced. http://en.wikipedia.org/wiki/Metformin

If you are technically minded then you might want to read these articles. http://www.springerlink.com/content/r81606gl3r603167/ and http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2265.2011.04029.x/pdf

They are a bit tough-going on the science but worth ploughing through. Why? Note the following comments/partial statements: “Hypothyroidism is characterized by decreased insulin responsiveness”; “the pivotal regulatory role of T3 in major metabolic pathways”; “The effect of thyroid hormone on basal metabolic rate was recognized more than a century ago”

The community knows that T3/NTH makes hypothyroid patients feel better – but the medical establishment is scared of T3/NTH – probably because they don’t understand how it really works. The medical establishment might find an alternative line of argument about impaired metabolism more palatable if we can show them this real proof that the old desiccated thryoid treatment **was/is** having the right result – the i.e. the T3 is jump-starting the metabolism by re-activating AMPK. If Metformin (or one of the other anti-diabetic meds) could actually also do the same thing for hypothyroidism without the “dangers” of NTH, they they should be jumping at the opportunity.

The great news is that Metformin is very cheap, stable and has very few serious side effects (and certainly none on the heart). To use the car engine metaphor, if glucose is our petrol, AMPK is the spark plug and both T3 and Metformin are both ignition switches. Sometimes if you have flat batteries in the car, it doesn’t matter how much you turn the ignition switch or pump the petrol pedal, all it does is flatten the battery and flood the engine. Dr. Skinner in the UK has been treating “pre-hypothyroidism” the way that some doctors treat “pre-diabetes”. Those hypothyroid patients who get treated early (before the wretched blood numbers get into the magical range) probably haven’t had their AMPK pathways altered and the T4-T3 conversion still works. The use of drugs as prophylactics is well understood by the medical establishment (e.g. baby aspirin for hearts), so there is no reason therefore why thyroid hormone replacement therapy shouldn’t logically be given to ward off a greater problem down the line.

It’s my belief that there is clear and abundant academic evidence that the AMPK/Metformin research should branch out to also look at thyroid disease.

As a supplementary on the history. I have PCOS; my female relatives have PCOS; my mother has just developed breast cancer which we are certain is related to the oestrogen dominance/insulin resistance. My daughter also has had Coeliac Disease since weaning (and oh boy, that was a fight to get a diagnosis but we got there). My daughter was showing lots of PCOS symptoms (some of which are of course hypothyroid symptoms) alongside the Estrogen, but because there were no cysts…no diagnosis, which is not correct by the Amsterdam criteria, but there we have it. So we moved “off topic” in PCOS terms, did a 9 month experiment of adding and subtracting one thing at a time to get to a (more) stable outcome. We never got the PCOS diagnosis but we did end up with T2DM Type 2 Diabetes) by the backdoor and the Metformin. We had two stupid consultants who reduced her to tears – their logic was unbelievably crass and at odds with long standing proof: “there isn’t a tap in your neck which stops the sugar getting to your brain you know” grrrrr. I have since found the links between people with T1DM (Type 1 Diabetes) who inject insulin and hypothyroidism too.

So my idea is that we need to talk to the medical profession in a language they relate to. They think Natural Desiccated Thyroid is voodoo, so they switch off. YET the NDT is doing something very, very scientific: the direct T3 is kicking the closed -own metabolic process back into life, just like Metformin does for insulin resistance. Who says there isn’t more widespread T4 resistance? There is serotonin resistance! http://www.ncbi.nlm.nih.gov/pubmed/17250776

http://web.archive.org/web/20130426233947/http://www.hotthyroidology.com/editorial_79.html Take a look at page 63.

Disclaimer: I, Sarah, am not medically trained and I haven’t even got a University degree. My business, however, is researching complex financial data and since leaving school, I have probably graduated with a PhD in the University of Life. My daughter has two degrees and my husband is in IT so I’ve learned a lot about logic over the past 30 years. I think that to take this debate forward, we need someone with the credibility to do a piece of academic research and get it put into one of the highly ranked journals – even doing a relatively straightforward meta-analysis of all the published works on AMPK/T3 /metabolism would be a start. I know everyone feels desperately miserable about not being treated properly, and it is probably very sexist that us bunch of moaning women are not taken seriously. BUT perception is reality and we have to deal with that reality as best we can. And I think that our sisters in the chronic fatigue/ME camp should have reason to join us on our quest too. I wouldn’t know where to start to find out how to sponsor a university researcher but maybe we should think about that as our “big thing”.

Let’s talk.

124 replies