๐ฃ Are you on Threads? Or Mastodon? Or Tribal? Or facebook? Or Bluesky Social? Or Diaspora? Or Counter.Social? Or Reddit? Or Tik Tok? Or Instagram? Or any other โsocialโ site where information about this petition can be posted?
๐ฃ Can you add a note to emails you send?
๐ฃ Do you have your own blog or website where you can add a plug for this petition?
๐ฃ Obviously, donโt become a pain by excessive repetition. But bear in mind that right here we have had at least three posts within the first day! So, within the limits of tolerability, do repeat post โ and extend those repeats over the six months that the petition will run.
๐ฃ Quote from existing posts. Or make up your own wording.
Dr Pete Taylor's original post on twitter:
โPete Taylor @DrPeteTaylor
Lovely people please could you sign this petition and share widely. Thyroid disease does not get sufficient funding despite being very common, this may help address this -Thxโ
Wording of actual petition on government petition site:
โGive more funding for thyroid research and patients after price hike
A fine of ยฃ84 million has been levied for the price hike in liothyronine (T3), which had a significant impact on patients. We request that an amount equivalent to a proportion of the fine (1-5%) is made available for thyroid research and support for patients with hypothyroidism.
Hypothyroidism is one of the commonest conditions in the UK. However 10-15% of patients despite levothyroxine treatment have persistent ill health, although some find their symptoms improve dramatically with liothyronine (another thyroid hormone). Despite being a common problem hypothyroidism has not attracted research funding and there have been no new treatments in decades. More funding for research and patient support might revolutionise the treatment and lives of many patients.โ
Parliamentary petition for more thyroid research funding
You are welcome to link to that, if you wish. (I can't think why - though if someone is blocked from HealthUnlocked (e.g. by a company firewall), it could have some use.)
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Written by
helvella
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The one thing it doesnโt go into - unless I missed it - is that doctors are reverse-justifying denying the drug even to people who have been on it and found it helpful. Ie. The price rise doesnโt just deny it to those who have never had it before.
What it also doesnโt go into is just how little time is spent training doctors in all the mysteries of the thyroid and vagaries of thyroid medicine. But perhaps - because he himself knows a lot about it and / isnโt a patient - he hasnโt had to run up against the kind of GP thyroid practice we do!
The great thing to take away from this thread is that there are doctors out there who get it. And who prioritise the health of and symptoms patients tell them they have, without constantly resorting to a single number as a proxy for health, which has never been a good approach to medicine before or now!
This is one of the few times that we have seen a genuine consultant positively trying to work with patients to achieve improvement all round. (As contrasted against all the self-promoting supplement sellers, etc.)
The petition needed more than 100,000 signatures to be even looked at. So this petition was bound to fail at the first hurdle unfortunately. I am so sorry that there were not enough of us in the thyroid groups to sign the petition I do not know how you could get more thyroid patients involved .
Shelleyblue, The petition didn't fail at the first hurdle, which was 10,000 sigs to get a government response. But you are right that it's near impossible to get to 100,000 signatures.
Me too, couldn't believe how slim and energetic she is. I have to admit I haven't watched any of it before but I've since had a search and the thyroid issue is easy to miss - I find detailed info on the HRT regime, diet and exercise, but almost nothing on thyroid apart from a couple of mentions that she takes medication and diets/exercises for it, I do that too but you can now put a '1' in front of my clothes size ๐
She has her own range of exercise equipment. I donโt think most of the forum members could do what she does so not a good ambassador for the majority here who struggle. Iโm sure lots of us would love to control our symptoms with diet and exercise ๐ฑ
All I can say is, she must be a super converter - they do exist ๐ซค
The problem is, people see her and how active she is and then think anyone with hypothyroidism should be the same. Iโve even had things like that said to me - so and soโs got an under active thyroid and sheโs fine, are you sure itโs not all in your head ? ๐ก
Well, I didnโt even get the โwhat do you expectโ answer. My GP wanted to diagnose me with CFS over the phone - I hadnโt seen him face to face for almost 3 years. I can tell you that conversation went downhill very quickly. ๐๐๐
Reply received from CMA re: query โWho gets the money?โ
โThe CMA has approval to offset 100% of its qualifying litigation costs using CA98 penalty income (cash) collected. Surplus cash from CA98 penalty income is surrendered to HMTreasuryโs Consolidated Fund.โ
So basically the lawyers get their share and the rest goes to the HM Treasury bank for general government banking use.
I donโt suppose anyone will be surprised but Dr. Peter Taylorโs idea is a rightful use of this money. I could say something here that I would not regret but I might get into a lot of trouble. So โnuff โ said.
My Under active thyroid has caused me a few problems over the last few years ๐ but thankfully itโs under control now ๐ฅณ I am now helping people to try & get to my position. But as usual it needs government assistance. If you would like to help ? please get involved in our petition
1.8M followers, thatโs ideal and he seems popular - so thats an interesting set of comments under there too, a lot of very tired and probably under treated people happy to tell him about their thyroid issues.
asking my next door neighbours with a large family was very worthwhile
has anyone else got their area to go higher than 15 yet ? is there a prize.
i'm thinking of putting a notice on the chemists leaflet stand next..... might try to get away with sticking one near the repeat prescription box at GP's.
Surreptitious or overt/agreed flyer dropping is definitely a usable technique.
I'll offer a year's supply of T3 to the person who gets the most signatures. But I demand proof - the confirmation email from everyone claimed to have signed. Printed on unbroken eggshells.
This is the first time Iโve read about this petition- which I have now signed - and Iโve been following posts here for a couple of years. I think it needs reposting regularly.
There have been as many posts about it as days since it was launched!
Dr Pete Taylor first posted about it (on Twitter) at 12:36 PM 4th September.
Lovely people please could you sign this petition and share widely. Thyroid disease does not get sufficient funding despite being very common, this may help address this -Thx
Bearo, do you receive the HU daily digest? That's a good way to keep up with new posts on a daily basis. I try to skim through it every morning to check I've not missed anything important.
Good to see the Thyroid Federation International emailing everyone who is registered with them!
Have you signed the Petition for Thyroid Research Funding?
Dear ,
Dr Peter Taylor PhD, FRCP (University Hospital of Wales, Heath Park, Cardiff) has created a Government Petition and needs your support. Please sign and share as much as you can.
Give more funding for thyroid research and patients after price hike
A fine of ยฃ84 million has been levied for the price hike in liothyronine (T3), which had a significant impact on patients. We request that an amount equivalent to a proportion of the fine (1-5%) is made available for thyroid research and support for patients with hypothyroidism.
Hypothyroidism is one of the commonest conditions in the UK. However 10-15% of patients despite levothyroxine treatment have persistent ill health, although some find their symptoms improve dramatically with liothyronine (another thyroid hormone). Despite being a common problem hypothyroidism has not attracted research funding and there have been no new treatments in decades. More funding for research and patient support might revolutionise the treatment and lives of many patients.
Sign the petition now
Thank you on behalf of Dr. Peter Taylor and all thyroid patients.
Best regards,
Thyroid Federation International
Screenshot of email from Thyroid Federation International re Dr Pete Taylor's petition.
Imagine every ACTIVE member here signed, we'd still be a long way from the 100,000 Dr Pete Taylor said he wants to reach. (And who wouldn't want the largest possible number?)
The ONLY way we can get there is by passing it on - getting friends, family, colleagues, anyone you come into contact with, all to sign. And, if possible, getting them passing it on further.
Will do Helvella, I will share once a day on my social medias and explain to peeps how important it is. I will also ask then to share it on their social medias tomorrow.
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