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03-06-15, 19:24 #1
From Hypothyroid to Business.
From Hypothyroid To Business
I would like to inform that at the moment I am working on a wide theme: "From Hypothyroid To Business".
During the next year I will come back with a comprehensive article in which I will review the globally growing problems with hypothyroid patient advocacy which is in the process of being hijacked by individuals who have made hypothyroidism a lucrative business for themselves under the guise of "activism".
The reason I even bother deal with this issue is that all these phony "activists" exerts no real influence on the conditions the world's other hypothyroid are forced to endure. This alleged activism "convince" those who are already "convinced" and the traces of this activism in the outside world, are few, if any at all.
Phony "activists" hold a huge populations of hypothyroid patients engaged in aimless thyroid-entertainment, which procures profitable traffic to their sites, where they exchange with other "activists" the same articles; they constantly recommends each other to each other, and finally, they mix together the good and the bad sources of knowledge. Some of them write their own books or articles without really understanding what they actually write about, or some of them violating someone else's copyrights by "borrowing" or rewriting the work of others.
They make the hypothyroid world to a closed bubble, in a vacuum without a connection to the outside world, and yet they complain big time, that the world is unfair an does not understand those who suffer from hypothyroidism.
How the world can even try to understand those who suffer from hypothyroidism - when the world is constantly bombarded with images of the thyroid "activists" with their beautiful, shapely bodies, dressed in the latest fashion, with fine, smooth faces, shiny big eyes and big smiles that reveals beautiful mouths full of beautiful Hollywood teeth, not to forget those beautiful, often long, glossy hair blowing in the wind....
Can these images of "suffering from hypothyroidism" appeal to the world's compassion and solidarity with us?
I don't freaking think so!
On the contrary, faced with images of all these happy hypo-beauties, the world will never understand the depth of suffering, so terribly many obese, swollen and broken hypothyroid women are condemned to.
I have no hope that we can change much in this World of Hypothyroidism-Businesses, but the reliable hypothyroid websites and genuine activists are hereby warned against being tried hijacked to provide space for fake hypothyroid activism. Be aware, because it takes a long time to build a reputation, but it takes only a few moments to lose it.
For those who really want to keep up with reliable and trustworthy information from the World of Hypothyroid Patients, I can recommend only following patient sites (in a random order):
Stop The Thyroid Madness (Janie Bowthorpe)
Thyroid Patient Advocacy (Sheila Turner)
Sick to Death (An advocacy project by Maggie Hadleigh-West)
Thyroid-info.com (Mary Shomon)
Stephanie Buist (where Stephanie guide you, you can safely follow)
It's a random order, and hopefully this list will be updated later on, but don't hold your breath.
Yes, I know that several "important" hypothyroid websites are not on this list, but they are themselves to blame. Had they existed at the time, I was a beginner and needed proper information and guidance to get out of my own Thyroid Hell, I would not have survived to this day. They are so full of shit, mixed with good or mutually inconsistent information that I could even die many times before I got around this mess.
They recommend at the same time doctors and other experts who each speak for totally opposite treatments, totally opposite points of views, or some doctors and experts warn against what others doctors or experts recommend etc. They fill their websites with topics, words and expressions whose agenda, meaning and effect they at all do not comprehend.
Instead of valuable information and insight, they offers an inferno of contradictory information, because "you gotta publish something almost every day, or you will be forgotten", so they filling their sites with no matter what. Hell freezes over (my favorite saying) before I recommend their bullshit.
In Scandinavia, I can recommend to join an patient association Thyroidea.no in Norway. I do not link directly to Thyroidea.no because they also mix together the good and the bad sources of knowledge, but if you google Thyroidea.no, you will find them. This organization really trying to connect with the wider society, and trying to create a platform where patients and society hopefully with time can meet and negotiate for better treatment of hypothyroidism. Thyroidea.no deserve respect for their efforts, and they deserve more active members to help them.
I do not know much about hypothyroid activism in Sweden. For some unknown reasons, hypothyroid activism in Sweden has always been "buttoned" and surrounded by secrecy. However, I can highly recommend dr. Helena Roth Svensson's book and website, and I can also highly recommend the blog Thyroidhormones (in Swedish). There is one more significant Swedish website, but it's connected to an webshop which sells nutritional supplements to such high prices that I will not link to them.
As for Denmark, I know all about Danish hypothyroid "activism", and so far, I can not at all recommend any of their resources. Some of them are just SO fake, a few are real, but they all are so entangled with each others, that I really can not recommend any of them.
However, if you believe that there are other reliable patient resources I have overlooked in our Big World - send a message, or reply to this post. Please note that I reserve the right to refuse approval of recommendations, with which I do not agree. Please, do not even try to recommend in fact, fake activism resources.
Yes, I know. I'm not a nice girl. I'm a bitch. I was born a bitch. I live as a bitch and I die as a bitch, but nevertheless I was freaking hypothyroid for almost 40 years and my big heart is full of love and compassion for all those who suffer like I suffered, but does not have the strength to save their own lifes from the Thyroid Hell, like I did. Hell will freeze before I let them down ... Therefore... see you next year and remember the headline: "From Hypothyroid to Business".
I really, truly love (most of) you.Sist endret av Mod; 07-06-15 kl 17:24 Begrunnelse: Website added
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08-06-15, 19:00 #2
Sv: From Hypothyroid to Business.
It's not so pretty. In fact, it's very ugly, as it takes place in Denmark at the moment. This important matter of hypothyroid activism has been kidnapped for personal gain, which has recently costs hundreds of patients the loss of other treatment options, than synthetic T4 alone.
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