Dr Pete Taylor’s Fund Thyroid Research Petition 📣🔔🔊💬

[helvella]

📣 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 “social” site where information about this petition can be posted?

📣 Can you add a note to emails you send?

📣 Do you have your own blog or website where you can add a plug for this petition?

📣 Obviously, don’t 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 – and extend those repeats over the six months that the petition will run.

📣 Quote from existing posts. Or make up your own wording.

Dr Pete Taylor's original post on twitter:

❝Pete 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 -Thx❞

Wording of actual petition on government petition site:

❝Give more funding for thyroid research and patients after price hike

A fine of £84 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.❞

Parliamentary petition for more thyroid research funding

healthunlocked.com/thyroidu...

Please sign this petition!

healthunlocked.com/thyroidu...

Give more funding for thyroid research and patients after price hike

healthunlocked.com/thyroidu...

This is a direct link to the petition:

petition.parliament.uk/peti...

I have posted the above as a blog here:

helvella.blogspot.com/2023/...

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.)

REMEMBER

All UK Parliamentary petitions are entirely without cost and do not result in advertising, etc.

[greygoose]

Signed and posted on Facebook.

[Decant]

Signed. I'll share it on Facebook, etc

[HowNowWhatNow]

Has anyone posted / can anyone post this on Twitter?

I find that has more reach than most other sites - among the generations not on Tik Tok.

[helvella in reply to HowNowWhatNow]

A certain Dr Pete Taylor did so!

twitter.com/DrPeteTaylor/st...

But do post again, quote post, repost!

I forgot TikTok - will add to the list in my post.

[HowNowWhatNow in reply to helvella]

Great thread

[HowNowWhatNow in reply to HowNowWhatNow]

The one thing it doesn’t 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 doesn’t just deny it to those who have never had it before.

What it also doesn’t 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 / isn’t a patient - he hasn’t had to run up against the kind of GP thyroid practice we do!

[helvella in reply to HowNowWhatNow]

I think there are limits to what can be argued and discussed usefully on Twitter.

What you refer to needs discussion but better done somewhere else and use links from Twitter, etc.

[HowNowWhatNow in reply to helvella]

Of course.

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!

[helvella in reply to HowNowWhatNow]

I agree.

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.)

That alone is to be celebrated.

[crabapple in reply to helvella]

He's one from the debate in March I believe?

[Zephyrbear in reply to helvella]

I retweet it every time I see it. Mine was the 74th signature to it! Woohoo 🥳

[HowNowWhatNow]

thank you for sharing

[amala57]

I've shared on Twitter

[RedApple]

I'm doing my best to share, but the numbers are creeping up at snail's pace 😞 Where is everyone!

[helvella in reply to RedApple]

Tomorrow, and tomorrow, and tomorrow,

Creeps in this petty pace from day to day

[RedApple in reply to helvella]

Tomorrow isn't acceptible! We need this to happen TODAY!

[mrskiki in reply to RedApple]

I expected more, considering those of us signing are getting friends and family to sign where we can, where is everyone?

What’s going on, if we get average of 4 non thyroid problem people to sign each that’s a worrying only 200 of us so far 😢

[RedApple in reply to mrskiki]

The number is creeping up slowly but surely. Now at 1,082 as I type this.

[helvella in reply to RedApple]

I suppose there is some comfort that it has broken the 1,000 "wall".

But we need that many EVERY DAY for three months (approx.).

[HowNowWhatNow in reply to RedApple]

It’s possible that a few of the people who signed haven’t then clicked on the email in their inbox to confirm their signature.

[mrskiki in reply to HowNowWhatNow]

Yes that can easily be missed worth asking people to check when signing

[nightingale-56]

Signed and will share this afternoon.

[DippyDame]

I've also posted to friends on What'sApp...as well as Facebook.

Come on everyone!!

[helvella]

Just hoping that this leads to each and every person who reads this post to encourage a friend, a neighbour, a relative, to sign the petition.

Getting near 1,000 as I write this - yet there are many constituencies with not one single signature yet recorded.

The map can be accessed here: petitionmap.unboxedconsulti...

Edited to update map - but cannot post the edited version!

New reply at end of thread.

[tattybogle in reply to helvella]

i think i just figured out how to email my children and attach a link .... which is very lazy cos they only live 20 feet away.

[tattybogle in reply to tattybogle]

collared my next door neighbours ... morecambe now maroon... Yeah ...Onwards .

[Shelleyblue in reply to helvella]

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 .

[RedApple in reply to Shelleyblue]

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.

[helvella in reply to RedApple]

And it is STILL OPEN to receive more signatures.

Even if 100,000 is unrealistic, the more the better.

[mrskiki]

Someone once asked me who the Davina of thyroid is? I think one would be useful now.

[helvella in reply to mrskiki]

Davina McCall is actually hypothyroid!

My vade mecum has a section on famous people with thyroid disorders.

helvella's Vade Mecum document is available here:

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

helvella.blogspot.com/p/hel...

[mrskiki]

Never! I’ve heard so much praise for her championing of menopause by both men and women, I can’t believe i missed she was hypothyroid….

[Gingernut44 in reply to mrskiki]

Well, to look at her you would be hard pressed to know she is hypo. I don’t know what replacement she’s on 😱

[mrskiki in reply to Gingernut44]

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 🐘

[Gingernut44 in reply to mrskiki]

She has her own range of exercise equipment. I don’t think most of the forum members could do what she does so not a good ambassador for the majority here who struggle. I’m sure lots of us would love to control our symptoms with diet and exercise 😱

[helvella in reply to Gingernut44]

If someone is treated adequately - that is precisely how it should be!

I think she is on levothyroxine but she doesn't speak much about it.

[Gingernut44 in reply to helvella]

All I can say is, she must be a super converter - they do exist 🫤

The problem is, people see her and how active she is and then think anyone with hypothyroidism should be the same. I’ve even had things like that said to me - so and so’s got an under active thyroid and she’s fine, are you sure it’s not all in your head ? 😡

[helvella in reply to Gingernut44]

Always one to try to look at things the other way (as well!), maybe argue "This is how someone can be if properly treated. So treat me properly."!

Remove the dismissive "Well, what do you expect?" attitude.

[Gingernut44 in reply to helvella]

Well, I didn’t even get the “what do you expect” answer. My GP wanted to diagnose me with CFS over the phone - I hadn’t seen him face to face for almost 3 years. I can tell you that conversation went downhill very quickly. 😂😂😂

[arTistapple]

Reply received from CMA re: query “Who gets the money?”

“The 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 HMTreasury’s Consolidated Fund.”

So basically the lawyers get their share and the rest goes to the HM Treasury bank for general government banking use.

I don’t suppose anyone will be surprised but Dr. Peter Taylor’s 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 ‘nuff ’ said.

[helvella in reply to arTistapple]

Thanks for asking.

I think the petition is just as meaningful regardless this reply (which is as I expected). Even if never applied, it makes an argument.

[arTistapple in reply to helvella]

Of course it does. It would be brilliant if properly acknowledged.

[helvella]

And being supported by footballer:

Chris Kamara @chris_kammy

My Under active thyroid has caused me a few problems over the last few years 🙈 but thankfully it’s under control now 🥳 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

[mrskiki in reply to helvella]

1.8M followers, that’s 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.

[RedApple]

2073 signed as of 07.48am 07/09/23

[helvella in reply to RedApple]

That's not a bad overnight increase!

[tattybogle in reply to helvella]

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.

[helvella in reply to tattybogle]

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.

[tattybogle in reply to helvella]

lol.

[helvella]

Just hoping that this leads to each and every person who reads this post to encourage a friend, a neighbour, a relative, to sign the petition.

Getting near 1,000 as I write this - yet there are many constituencies with not one single signature yet recorded.

The map can be accessed here: petitionmap.unboxedconsulti...

Map

[Bearo]

This is the first time I’ve read about this petition- which I have now signed - and I’ve been following posts here for a couple of years. I think it needs reposting regularly.

[helvella in reply to Bearo]

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

twitter.com/DrPeteTaylor/st...

Please sign this petition!

healthunlocked.com/thyroidu...

Give more funding for thyroid research and patients after price hike

healthunlocked.com/thyroidu...

Parliamentary petition for more thyroid research funding

healthunlocked.com/thyroidu...

And, of course, this post itself! Four in three days.

Further, members are replying to these posts so that they keep appearing in Latest Posts.

And more posts will, I am sure, be done. If others don't, I will try to keep doing them. But some variety in posting is always welcome.

Please spread the word far and wide!

[pffft2017 in reply to helvella]

Only 10,973 signatures so far, keep at it.

[RedApple in reply to Bearo]

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.

[Bearo in reply to RedApple]

Yes I do!

[tattybogle]

Anyone with a relative /friend in Skegness , Boston , Glenrothes , Edgbaston , Ladywood , Oxford east ??

Be the first person to get anyone to vote in any of these areas .

[helvella in reply to tattybogle]

And Merioneth and West Belfast, I think I noticed.

[tattybogle in reply to helvella]

We also need someone with friend /relative in New Forest (East).

[Thyroid17]

Done and shared

[helvella]

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.

petition.parliament.uk/peti...

Petition Wording:

Give more funding for thyroid research and patients after price hike

A fine of £84 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.

[diogenes Remembering]

I've put m ysignature in!

[helvella in reply to diogenes]

Just another 94,000 or so to go!

[helvella]

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.

[helvella]

✍️ 🔏 ✒️ 📝 ✏️ ✎ ✐ 🖊️

Is there anyone here who hasn't signed this petition?

Is there anyone here who hasn't passed on this petition and tried to get others to sign?

(I hope it's obvious I'm only referring to those who can legitimately sign!)

[Katherine123]

Just signed and shared on my social media.

[helvella in reply to Katherine123]

Great! Thank you. We need to keep signatures coming.

Even if you signed ages ago, check whether you can spread the word farther and wider.

[Katherine123 in reply to helvella]

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.

[helvella in reply to Katherine123]

That is great - and just what we need.

Unfortunately, repetition and reminding is key.

[pennyannie]

Saz-J