This is an interesting examination of several phenomena:
1. The media's difficulty with communicating scientific research and how they "position" or interpret the findings of a particular study;
2. The increased importance and influence of patient advocacy groups;
3. The failure by medical researchers to explain their own resesarch and its implications;
4. The failure of physicians and others to properly explain that even if symptoms are real, and treatable, there is often non-drug help that can be had in helping to cope with one's disease;
And, I will add a 5th, not mentioned in this article, but one that is often raised on the forum, at least since I have been a member,
5. The feeling that if thyroid disease was a predominantly male disease, that more research would be done and treatment guidelines would be more reasonable; and as well, patients would be treated better and not be labelled as "not fully wrapped": a term used in the article.
I look at some of this article's premises and can see corrolaries to what is currently happening in Canada with respect to two of our thyroid groups, Thyroid Canada (longer standing group) and Canadian Thyroid Patients Campaign (a newer group) - the first group appears to take a conservative approach and Canadian Thyroid Patients Canada - which has an openly pro-active approach. I think we are seeing the beginnings of a thyroid movement in Canada at the moment - patients are seeing their services being taken away (for example, no more testing of T3 unless an endocrinologist orders it, for example), or the recent closing of a clinic in Nova Scotia recently of a specialist who prescribed NDT regularly for his patients, or the fining of a functional physician (licensed MD) in Quebec for prescribing NDT and T3, even though they are legal here. This has been happening for awhile, but for the first time, I am seeing reports on TV and in major news outlets about thyroid disease (the Pilon study was heavily reported here as one of its authors is a resesarcher at a major Canadian university).
With a federal election looming in October in Canada, I will be very curious to see if either group moves on changes in treatment policies for thyroid patients. As I am not really well enough to engage on this front or on the forum, I shall observe from the sidelines at the moment to see what will transpire in my own backyard.
Thank you for posting this! I think the article is worth reading and thinking about. I am not sure what the answer is. I suspect it includes both aggressive advocacy and one on one lobbying with medical associations and government health policy makers. Time will tell. In the meantime, many thyroid patients everywhere, yes, everywhere - no country is exempt here - struggle to receive proper diagnosis and the treatment they need to feel better.
Just on the point of what is happening in Canada. There was a YouTube meeting where Sir Malcom Grant, who was the then Chair of the NHS Board, meeting in Canada, talking about deprescribing - only not to call it deprescribing as patients misunderstand that as taking medication off them, call it polypharmacy instead they said? So connections with what is happening here??
I’m not sure to be honest. Poly pharmacy is when someone takes multiple drugs for a variety of conditions - and it is particularly difficult for older patients because they do not metabolize drugs well and experience side effects more profoundly. I don’t know what Sir Grant was talking about, but I don’t think it’s the same thing.
He was talking about deprescribing. Which is what they are doing with T3 here, and in Canada. And yes, no doubt it affects a wider cohort of patients on other meds, - but it is deprescribing under any term, calling it Polypharmacy is a different thing altogether and confuses patients and public. They hide their actions behind words. Deliberately?? Very likely. Check out the rubbish Sir Bruce Kehoe spouted at the NHS board meeting after the Consultation (- Nov 30th 2017) calling T3 levothyroxine and then saying it was a more expenses version of T4!!! Then retires from the post of NMD. his replacement, Powis, try to fob it off as a ’slight error of language’!! It is all too easy for them to mislead and misguide by ‘errors of words’.
Half the problem with older people taking a multiple of drugs for ‘various’ conditions is because as they get older they have been drip fed one drug after another to treat symptoms, not causes. Without much thought for the side effects, which then need further drugs to counteract the side effect symptoms.
I wonder just how much is actually known as to why older people don’t metabolise drugs well. I don’t think it is just older people who struggle to metabolise drugs, anyone with a metabolic disorder is likely to struggle, and other medications impact, this is not always known or clear. There are genetics that determine ‘fast’ and ‘slow’ metabolisers of coffee and certain drugs. Those who have these genetic polymorphisms may be affected in ways as yet unknown. I seem to be unable to metabolise T4, or ever looked to investigate why, choosing to disbelieve me. In fact they preferred to blame it on anything but the medication itself yet stopping T4 alleviated the worst of the symptoms.
I just wish these medics and researchers would accept that not everything that is currently ‘known' is going to 100% correct, that errors of understanding are bound to exist. If they ensured that the research held integrity to start with, and was not biased towards intended outcomes, would be a start. Patients get upset because they are ignored, when they are the best ‘evidence’ as to what his happening to them, We are constantly told this med/or that is the be all and end all, T4 in the case of us thyroidities. We are fobbed off, talked down to, dismissed and left struggling through a life, accumulating more and more health problems, that at times, for too many, is not worth living. Our lives have been and continue to be ‘curtailed’ at best, destroyed at worst, because no one believes we might just be still struggling even with ‘in range bloods’.
I don’t understand how any one can not understand why patients get so upset. We only get one life. Others are playing ‘God’ with our lives and they expect us to go away, take the T4 (in our case) and stay quiet. Sadly many do.
When patients ‘kick off’ and start fighting back they are seen as abusive and out of control. I wonder how many of those who lack the understanding would be the same if they, or someone close to them had these ‘mistreated’ conditions?
The worst of it is that in many cases, patents are kicking off because, out of desperation they are doing their own research, finding that there is new thinking, research and such out there, which is being ignored, sometimes because ego’s get in the way, but largely to keep BP in profit. Yet these new thinking/research are being ignored for the ’status quo’. Thyroid Disease NICE guidance draft a point of example.
Sorry ranting again. But it really annoys me to hear these ‘professionals’ saying things like they won’t look into something because they get grief about it. I had a ’top’ journalist refuse to report on the T3 situation a couple of years ago, because he ‘got too much grief from both ends of the spectrum’. A sign that someone has got to a position where they don’t need to work too hard? Can pick and choose. IMO any journalist worth his salt would see the real life story behind the ‘grief’, would ask themselves why is there ever a ’spectrum’? Why is there a divide between Dr and patient? That in itself should show a problem that needs publicity and sorting. Similarly the researchers should be asking themselves 'why are these patients getting so angry, what are we missing’. If symptoms like Adrenal Fatigue’ don’t fit with what is known - i.e. symptoms of adrenal insufficiency, then yes, it is not AI, but does that mean that AF does not exist? NO it just means that it has not been ‘defined’ as yet. Enough of us have suffered it to know it exists and the impact it has had. Yet again, we are dismissed as ‘making it up’?
Thanks for your post! And if we can't rant here, then where can we? I enjoy a good rant occasionally as it clears the mind and soul a bit and have done so on this forum myself. And I agree with you about the divide between doctor and patient - some of which I suspect is in part (but certainly not all) a "system" problem - the establishment of artificial guidelines and that some MDs feel so bound by them that patients get short shrift.
I'm not feeling up to writing more today, so I will leave it there for now and wish you all the best. Sending positive thougths your way today.
I do find a rant somewhat cathartic to clear the mind. And yep, what the forums are for, safe places to do so. But not safe if they are going to be used against helping us? Sadly it is the patient, someone who is already under par, that gets the thin edge. I think all any of us ask is to be heard, listened to and taken seriously. And not be demonised for a condition that we have not asked for and have little control over. We are all just looking for help. Who else can we ask if not our medics?
Interesting, it highlights the importance of taking a scientific approach even if we don't like the results. Also, the importance of asking the right questions of research, making it clear what is fundamental research and what is a coping strategy. If I get a headache, I might take an aspirin, this does not imply the cause of my headache was salicylic acid deficiency.
Similarly to the experience of those with CFS, I think there is a need to acknowledge the disempowerment that thyroid patients have experienced when they have not responded to Levothyroxine as predicted, or have developed suppressed TSH, or need T4 and T3 at particular points in the range in order to function, or need T3 even though the medical professional largely deny its effectiveness. For most of the last thirty years I have been treated by the medical profession as an ‘anomaly’, as someone who is a ‘bit abnormal’, variously suspected of having ‘depression, hypochondriacism, attention-seeking behaviours’. Only over the last 10 years, thanks to the internet have I come to realise that there are many others just like me. And how strange that my repeated ‘attention seeking’ has disappeared with T3, I no longer need appointments, am no longer accused of being depressed or a hypochondriac, and I feel the most normal I’ve ever felt, as long as I keep away from a GP.
Internet activism has its roots in the brewing anger arising from our neglect by the medical profession. It is with dismay that I learnt that NICE cite insufficient evidence in support of T3. Of course medicine is still developing, still learning. Why would medics seek to claim that everything that is to be known is already known. How arrogant is that? Why oh why has hardly anyone been interested to research T3 . The medical profession are aware of us, but everyone is too fearful of raising their head above the parapet. It is hardly implausible that if the human thyroid makes t3and T4 and the body uses both, that treatment just with T4 might not be the answer in every case. Yet we are having our T3 medication taken away. There are some important points in the article and thanks for sharing, but I fear for the future. It’s not as if I haven’t been known to the medical profession over the last 30 years, or been available to participate in research. Its just that no one was interested.
I remember all the criticism Linus Pauling had received for encouraging much higher doses of vitamins. It was extensive as I recall. He had been fluent in a number of languages & was able to draw on academic work from far more countries than most scientists.
This article does help me understand the why behind decisions that are made behind the scenes. Thank you for posting it.
This is an an interesting article and I thought it respected different viewpoints fairly sensitively. I have had treatment with CBT and find it useful to apply to everyday life irrespective of my mental state! I find it curious that people should be opposed to it, but understand that anger that stems from it being the only suggested ‘treatment’ for ME/CFS and lack of research in this area.
I think basically it helped me to understand the different philosophies that exist surrounding mind and body. It reinforces the idea that they are the same...( rather than separate) and intrinsically linked. The dualistic idea of separate mind and body (Descartes) is how many people see things and I think this partly leads to the level of upset experienced by people who think they are being told the problem ‘is in their mind’ when CBT (or counselling) is suggested as something that may help. It is a powerful strategy to relieve emotional distress, whatever the cause. I have heard Prof Simon Wessely (I believe another co-researcher) in interview and from my recollection he said something along the lines of ‘you can’t take the brain out of psychiatry or the mind out of neurology’ and other comments of a similar nature. Since then I have heard him say similar things relating to the unhelpful devision between physical and mental health. Thoughts, emotions and physical symptoms are all linked and can be affected by each other. Whatever the biological cause of ill health. Because it all stems from a human body, brain included, so is all biological ie. physical. There is no separate mind (in my opinion from my philosophical viewpoint). The biological nature of mental health may not be fully understood, but that doesn’t mean we shouldn’t be offered psychological strategies that may help. Neuroscientists are working on understanding this and there is evidence that therapy can ‘rewire’ the brain and affect neuron growth and circuits between different areas of the brain etc. I think that sometimes people may be offended when offered psychological therapy, but in my opinion everyone with chronic illness may in theory benefit... not everyone will find it useful as everyone’s different. I am not saying ME/CFS is not physical... just that everything is physical. If we don’t fully comprehend the root cause, or even if we have a reasonable idea of it and effective treatment, I still think that a psychological approach can be applied to improve wellbeing. This concept was understood by ancient eastern and western philosophies but seems to have been lost to some degree in our society.
Sorry this is a bit of a ramble, but I think both these researchers and activist patients have common ground in believing there is a biological cause of ME, but differing ideas of philosophy perhaps....?
One of the things about CBT is that we keep seeing it referred to in much the same way as "anti-depressants" - they seem to make all variations of CBT the same.
From what little I know, the various forms of CBT are not exact equivalents of each other.
I expect any therapy usually starts with the 5 areas approach, applying this to an individual. This is a way of evaluating and communicating the interconnectedness of mind and body. I think this is the core concept of any CBT.
Though I have read of people being given a web link and nothing else. Which might be rather hard for many of us to cope with. (I don't know from experience of CBT online, as I have non such experience, but unsupported web "courses" can be jolly tough.)
Yes I started with guided online therapy. The concept made real sense to me and since then I have used a lot of self help material, including books. It may be difficult if concentration isn’t there, but the basic concept is not hard to understand. There is a very high demand for one to one therapy on the nhs, hence the availability of other options to introduce the concepts. I suppose if it makes sense to you then you’re more likely to seek further treatment one to one.
Just by chance noticed another article today in the guardian about CBT for chronic insomnia. See the last paragraph. Looks like increasing access may be part of the plan.
I’m not sure what you mean by different forms of CBT? The term is a specific approach, cognitive behaviour therapy. The reason it’s so prolific is (you’ve guessed it) is because they’ve demonstrated its effectiveness, but just like anti depressants it isn’t suitable for everything/ everyone. What different forms are there?
CBT for cancer may be presented to the patient as a way of coming to terms with their diagnosis.
CBT for ME/CFS is based on the idea that patients are suffering from "false illness beliefs" and the patients are assumed not to be ill and therapists are supposed to persuade (?) or rid (?) the patient of those false beliefs,
CBT is tailored according to the situation, and some of it is apparently sadistic.
There is a thread on this article on an ME forum I sometimes read, and it gives the views of ME sufferers.
I have not got Fibromyagia CF or migraine noted on my records. Despite struggling with all three for years. My GP did suggest I had CF but did not record this, as far as I can see. My Osteopath suggested my problems may be Fibro. I definitely was having increasingly debilitating migraines. Until I stopped taking T4, after 20 years of telling GP it was not working for me. Within 4 days these symptoms largely disappeared. I note that from getting my T3 dose balanced I have not had need of the Osteopath since.
When many Dr’s refuse to acknowledge the early stages of thyroid disease and condition, might this account for at least some of the ‘medically unexplained symptoms’?
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