NICE have published today the economic plan, review questions, and literature search strategies for the upcoming guideline production. As far as the research strategy is concerned, which interests me most, I find an unthinking "scraping the barrel" approach where including everything good, bad or indifferent in thyroid research is the basis of the search strategy. Everything published is (by the act of being published) regarded as of equal relevance in assessing the evidence. Since we in our group now know that the vast majority if not virtually all of the randomised clinical trials included are fatally compromised in their findings through statistical failings, I'm afraid the same nonconclusions may eventually be issued later this year regarding the merits or otherwise of combined or T3 therapy. it will be interesting to see what weight is given to which studies in coming to a conclusion. However, for the record I post the Disclaimer contained in the document:
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and, where appropriate, their carer or guardian.
Local commissioners and providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.
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diogenes
Remembering
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Thanks for posting. Sometimes you wonder why patients' input isn't asked for before they publish their findings.
Few people who do not have hypothyroidism can possibly be aware of the distress caused due to options not being prescribed where necessary. Unless they have family members or have it themselves then a struggle begins when doctor tells the patient that your blood tests are fine when patient feels awful but they are given a prescription for anything but thyroid hormones or another prescription for the disabling symptom.
The NICE committee needs you to help them understand the results!!! I always laugh at the way people talk about "peer reviewed" research papers, because for this to mean anything, the peers need to have a good understanding of the topic. We seem to be the victims of "the blind leading the blind"!!!
Have any of you read the 'Can Medicine Be Cured. The Corruption of a Profession' but Seamus O'Mahony? Well worth reading as highlights the failings in research and how/why we are not in this situation. Nothing we didn't already suspect. His analogy is of bricks left lying around the yard whilst the edifice falls. These individual bricks are not substantiated with further independent research. The futility of research that is never backed up or followed through to confirm. More so the waste of a quarter of a trillion a year of research funds. This is where another scandal sits.
diogenes , I know you say that published research is what is held up valid, and only this is generally considered. Perhaps it is this that has to change. And quick. Who is reviewing this research for publication? We saw the response form Simon Pearce last year, that says it all, depends on who is in favour at the time and what their bias is, or even perhaps what the medical establishment is currently attempting to do?
One study, conducted on a limited and 'carefully' chosen cohort, with limiting parameters, which is never substantiated should not be seen to be defining.
The whole acceptance of current peer review procedure has to change. It is ineffective. Allowing old, poorly conducted and biased research and studies, to be held up as evidence when most of the time these studies and research are unsubstantiated. Most research I've seen has the caveat that 'this research needs to be replicated'. But they never are. These are the bricks O'Mahony says lie around they yard, until someone decides they need some 'evidence' to back up their point/action, e.g. the superiority of T4 and the the lack of evidence of effectiveness of T3.
Then they look back through the brick to find something that summaries what they want it to and use it, often it would seem without checking its authenticity and integrity against current knowledge. How many of these studies have more holes that substance?
I call to mind the one a couple of years ago that was based on an older population, who were given 25 or 50 mcg of T4, they had shown 'some' sign of hypo in the previous 12 months, or something like that. When these poor souls showed no improvement the conclusion was that over 65's don't need thyroid meds? If us poor lay people can see the flaws, why can't the review peers? Who is funding these peer reviewers. And I don't just mean to do the reviews.
And this system is dictating the limited and poor treatment.
It is this system that we need to change. Fine for people to get research published but unless it is collaborated by further independent studies it is of interest only, but should not be used as definitive evidence.
Doctors and researchers, who still hold integrity dear, need to be standing up and fighting for their work to be recognised. Not just accepting some bias peer review and accepting only what journal editors deem fit, based on current bias, to publish. They need to start rocking the boat and calling bias out.
Get medical and public debate going on this matter. Change the established corrupt systems.
In the meantime, perhaps doctor and patient experience should count for more than, what amounts, to flimsy career boosting research.
I call to mind the one a couple of years ago that was based on an older population, who were given 25 or 50 mcg of T4, they had shown 'some' sign of hypo in the previous 12 months, or something like that. When these poor souls showed no improvement the conclusion was that over 65's don't need thyroid meds? If us poor lay people can see the flaws, why can't the review peers? Who is funding these peer reviewers. And I don't just mean to do the reviews.
I think you might be referring to this paper, which was utterly appalling and sadistic :
I wouldn't believe who ever wrote those two paragraphs if they told me that it was raining, even if I was stood outside sopping wet, and could see rain drops all around me. What mastery of double-speak. It gives us a very real intimation of what to expect.
Are we really any better off than those tragic Third World countries? I think not - they have HOPE - we know how much the cards are stacked against us; arrogantly, therefore ignorantly, and thereby maliciously, where 'ignorance of the law is NO excuse'. Check the NHS Constitution for the blether that we are meant to receive. Charlatans and Scoundrels, paid via the Public Purse PLUS the 'Perks' to sell patients out.
Pretty much the same scenario as here with ME/CFS people, yet where there is a big political outcry. This guy and so many others are bringing very similar issues to the attention of the hard of hearing and to those of whom steadfastly refuse to change their batteries!
Dr Keith Geraghty
@keithgeraghty
27 Oct 2018
So, NICE ME/CFS review panel, we have 1 dr. from PACE trial, 1 physio who is running Esther Crawley's FITNET & MAGENTA trials, 2 x from staunch Liverpool CBT-GET promotion centre, 1 dr GP who sees CFS as medically unexplained symptom CBT promoted - TOTAL CBT Promotion BIAS !
I wasn’t holding my breath I’m afraid. I was referred to an endocrinologist who only specialises in the thyroid and her only references were TSH and ft4 and only treats with T4. I understand that she is one of those ‘specialists’ responsible for these latest guidelines 😏😏
Thanks for this. Is there anyway ThyroidUk can get recognition as a stakeholder? Also it's interesting to see from the minutes who is on the committee drawing up the guidance. Is anyone familiar with any of the names or know if they are supportive of anything other than levo monotherapy?
My confidence in medics was boosted this week when Harvard School of medicine published their guide to thyroid problems which assured me ..'hypothyroidism is easily diagnosed and treated'. That's good to know 😱
Thyroid UK is a stakeholder already. Also, The Thyroid Trust, British Thyroid Foundation, Thyroid Patient Advocacy, Thyroid Cancer Alliance, and Midlands Thyroid Support Group. They all form the collaborative joint groups who are working alongside Lord Hunt, and who compiled the dossier with BTA requested by Department of Health. There is a strong combined force pushing hard to get patients' voices heard bit.ly/LiothyronineDossier2018
It's great to hear this TaraJR, I'm lucky enough to get T3 on the NHS and although I'm not quite physically there yet it's completely resolved my brain fog, confusion and tinnitus. Hope it becomes more widely available for others who need it and admiration for those campaigning.
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