Yes I know not 100% thyroid but following research paper posted by diogenes earlier
healthunlocked.com/thyroidu...
Will post the source when I work out where I have so safely stashed it.
CFS is a deliberately broad diagnostic syndrome. Research should distinguish between ME and other issues of unrelenting fatigue.
ncbi.nlm.nih.gov/pubmed/294...
Whilst scrolling through from one piece of something to another - I came across the above. Not sure how relevant - but have heard of Schoenfeld before and his work with auto-immunity.
Thanks Cwill, this is very interesting, and a useful addition to the discussion of the Low T3 paper.
I believe I was diagnosed with CFS based on only 3 months of unexplained fatigue. And only in the very loosest sense, that my thyroid panel had looked okay for 3 months. As I had my thyroid removed the previous year for cancer, I didn't call it unexplained!
I've actually had a lot more treatment and support due to CFS than thyroid. Even though no one in the centre knows anything medical, they give a chance to meet other patients in an organised setting, write good letters to employees and for benefits, and put in a lot of pretty rubbish classes in relaxation, etc.
Wow and for me the thyroid CFS ME diagnosis/treatment has been absent, ineffective or downright dangerous. Glad that you have some support. Very much a postcode lottery. I’m in one of the worst areas of the country for T3 use and we have no M.E. services of any kind, but neither would they allow referral to the national centre of excellence in Romford, now closed that took a biomedical approach.
If anyone wants to understand how the BPS crowd first came for ME as an illness of altered beliefs I will provide a few sources of info. I hear of suicides regularly in the ME community and understand only too well how people get to that point. I also hear tales of abuse and neglect, in one case so severe that the person died, every single day. My forums are really scary. We all need to raise our voices to say enough is enough. The psychiatrists that have pushed this nonsense have huge influence, and trained the current crop of health care professionals, so these beliefs will take considerable time to die out.
Unrest on Amazon and Netflix, still being shown around the country periodically.
Oslers Web Book
Science Politics and ME Book
drmyhill.co.uk/wiki/My_Comp...
Scroll down and read the reasons why people are complaining by letter or signing the peptition.
Trigger warning for this link, extreme abuse:
drmyhill.co.uk/drmyhill/ima...
Petition to sign:
change.org/p/the-general-me...
I have not dived into the CFS forums, as I am still getting improvement as I raise my NDT, and haven't taken the CFS diagnosis seriously at all. It looks like they are very confusing, with all the different possible explanations for illness. At least with thyroid we are going down the one rabbit hole.
Do yoy reccomend any?
When I saw preview of your message the first thing I was going to say is it's a dice roll 
Whether you get treatment, if it's any good, benefits, carers, etc.
Do you mean CFS ME forums? I have not yet found the TUK HU equivelant so dip in and out of a few. Can be a bit full on as I say. They tend to be science or support-based but for anyone with PEM or Postexertion Deterioration (PED) as the cardinal sign the very best place to start is diet, supplements and pacing with a heart rate monitor. There are many groups for specific management strategies.
I firmly believe that we have to do the absolute best we can with any issues we can identify, ticking issues off the list.
Is this one not of any use?
Myalgic Encephalomyelitis Community is a community dedicated to providing reliable information and support to its members
As far as I understand it, the Oxford criteria were made as broad as possible precisely because it would then include as many people with fatiguing illnesses as possible.
You then minimise the number of people with real ME (as a proportion of the total). When the non-ME people get better, the ones who have ME can be told that they simply want to be ill, and they don't want to get better, and they are mentally ill.
It's similar to the problems people on thyroid treatment have. There is a minority of people who don't get on with Levo. Their voices get drowned out by the people who feel well on it, and the ones who don't feel well are diagnosed as being depressed, or having CFS or fibromyalgia or any other condition that can't be cured or treated.
So true. The similarities are striking. The psychobabble ‘health beleifs’ MUS ‘health anxiety’ obscure the very real issues people have that take them to their doctors in the first place. They are quite literally taught not to believe patients.
I see many discussions in which health care professionals repeat again and again that having access to eg Dr Google, forums, as well as access to our own medical data, will make us worse. Geez most people are less than a foot from a very powerful processor the like of which would have required a whole building to house in past decades. Are they honestly suggesting that medicine should remain in the Stone Age as our heads will be damaged by info? Many expletives used at this end.
This reminds me of times in the past when people weren't even told they had fatal illnesses. We think things are handled very differently now, but they aren't at all, the attitude has just moved sideways a bit
I trained originally as a critical psychologist, and so have a horror of the BPS. They are in the business of policing the boundaries of what it means to be 'normal', or a human being, and to brush lots of inconvenient bits out of the picture by defining them as madness
Another relevant snippet, when I was working in doctor - patient communication, I stumbled upon a piece of research about how much information patients wanted. They found that when a large and useful leaflet, or explanation by a doctor was offered, patients didn't like it. There were a tiny subset of patients who acted like the ThyroidUK crowd and did want to know. I've spoken to patients myself who don't want to know anything, and think it's very strange to go searching online.
I don't really know what to make of this. Quite frightening that the whole house of cards is a collusion!
Off the top of my head I think I would like to see people who didn't want to know in a classroom type setting, where the info could be rolled out very gently, with lots of basic biochemistry taught in the next room. And cups of tea and bean bags.
Well as a physio my whole job was communication. We have longer appointments than doctors and can work longterm with our patients so had the chance to delve a bit deeper in order to fully teach self care. No one can make a person do rehab especially when unpleasant symptoms are involved so bar acute care that is expert led, with full consent, it should be info based sessions around objective data.
I despair when I hear of poor practice but all of my patients asked ‘what does that mean?’. The depth of the discussions involved many variables but very few people implement a rehab routine successfully without understanding why it’s necessary. Expectation is a powerful thing: appointments running to time; thyroid easily treated wit TSH levels and levo; patients don’t always want detail etc. We always have questions after important apts and can’t all express them at the time.
No one can make a person do rehab
In the case of severe CFS, the people who are diagnosed sometimes end up being sectioned. When that happens the sufferers don't have any choice on what treatments they are put through.
Although I can't remember the source of this, there was the case of a boy, possibly in his teens, who had severe ME. He had been forced into therapy and the therapist(s) were convinced he was faking it. They said he would save himself if he had to. So they chucked him in a swimming pool. He sank to the bottom and didn't come back up. I think he was rescued eventually, but the whole scenario is absolutely jaw-dropping.
Another story that I read earlier today :
twitter.com/MyhillNews/stat...
Edit : Just noticed that cwill has already posted this.
No one can LEGALLY be forced into rehab. Lack of information about the proposed treatment is breach of the ethical code of practice and ignoring patient reports of harm or forcing treatment on patients is assault.
Sectioning people with ME is a disgraceful topic that if anyone wants to know more about either watch Unrest or look up the work of Per Fink. I became aware of this in my first year of severe ME when it happened to a patient in the U.K.
This is really frightening, that most patients don't want information. Did the research say anything about the background of the patients? Is this attitude related to lack of experience and confidence with medical information? Or is it more to do with how variously assertive people are?
I am sure the small number of people who did want to know has more education and were higher status than the group as a whole. But they were outnumbered by hundreds of not thousands, so the overall conclusion was that they were weird outliers 
I do think the problem is with the whole system. In this case people were being overloaded with tons of information at the same time they were getting their test results or being given a diagnosis or invited into a clinical trial. That's no time to be given loads of extra info.
I think cwill is describing a situation where the information is being shared much more organically, and with more time. It would be much better if patients could be given that in all disciplines.
My cousin is one who doesn't want to know, even though she's very ill, house bound, on a catheter, etc. I think for her the whole field is very frightening, and she doesn't think she'll be able to understand anything of use. She's been mystified by the science and convinced doctors are magical sorcerors, I think.
This makes me very angry, because it means those who can't read or research for themselves get a lower quality of care. Not just for long term conditions like thyroid, but going in for operations, one-off bits, nutrition, etc, etc, etc
I agree with most of what you say, though I hadn't intended to cast aspersions about the degree of education among those who remain wilfully ignorant. 
A lot of people just don't want to think critically about themselves or the world around them. There must be all kinds of reasons behind this.
I will never understand people who choose ignorance over knowledge when the subject is their own health.
Strange, isn't it? I think it also goes hand in hand with stigma about illness. I've got two hypo friends I am constantly nagging for their test results and things. It amazes me that they can see I know a lot more than them and am using it to slowly get better. Meanwhile they are both only a tiny bit better, thanks to my legwork!
Both of them have different reasons I think. The first is just scared of the whole thing. Won't question doctors, too scared to order from BlueHorizon without me standing over him, etc. He seems to believe me, but I think he's torn between believing me, believing his doctor, and then his brain gives up!
The second one I think it's mainly that she won't accept she's got a serious illness. I shared a New Yorker article that was going round a few weeks ago, and she told me she felt very sorry for the woman and grateful she wasn't that bad. I was really shocked, because she's both more sick than the woman in the story, and less in control of her health. But she won't settle to anything, takes supplements for a while for her 2 vit deficiencies, but then next I hear she's forgotten to take them all week. Then she's on a really strict fad diet that isn't related to auto-imnunity, and it says a week. She's constantly busy AND constantly more tired than me even tho I'm way more sick.
I think she's keeping busy all the time, because she can't cope with her degree due to concentration and executive function issues. So she's doubling down on keeping busy instead of solving either set of problems.
Both of them think there is something weird or special about me that allows me to research about my health. Actually I've met a lot of people who think that to some degree. They don't have that sense of self directedness and control over their lives.
Research paper about T3/T4combination treatment. What happened there?
An interesting study about thyroid, T3, selenium and ME/CFS 
CFS book / thyroid / scientific paper on ME/CFS by Dr Sarah Myhill
CFS/ME - Anyone with thyroid issues also suffer with?
New research linking CFS/ME with mould mycotoxins
