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  1. #1
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    Exclamation Kampen om hypothyroide ! Hvorfor kan britene, men skandinavene kan ikke?


    Hvorfor kan britene, og skandinavene kan ikke?


    3. februar 2013:

    Thyroid Petition Debate at Scottish Parliament on Tuesday 5 Feb.2013


    Since TPA’s inception in 2007, we have written to numerous individuals and organisations in our endeavour to ensure that the present diagnostics and treatment protocols will be investigated and, where necessary, changed, so that all sufferers of thyroid, and thyroid related conditions will be given a correct diagnosis and treated with medication appropriate to their specific needs. We have sent official complaints to the Human Rights Commission; Liberty; the Department of Fair Trading; the Charities Commission; the Secretary of State for Health (Scotland and England); the Secretary General and many others. Almost all of our letters and complaints have so far been ignored, or rejected, as they have been with other thyroid campaigning groups.

    TPA will not give up - we are fighting for you.

    We were thrilled to have been invited to a meeting with Elaine Smith, MSP at the magnificent Scottish Parliament Building in Edinburgh last year. The outcome of that meeting was that it was agreed that a Petition should be submitted to the Scottish Parliament Petitions Committee who would decide, in a case of dispute, whether it is admissible and if so, what action should be taken.

    As far as I am aware, the Scottish Parliament is the only Parliament in the UK where a petition may be brought by an individual person (other than a member), a body corporate or an unincorporated association of members. The English Parliament requires 100,000 signatures before they will decide whether a Petition is admissible to be debated.

    I am now delighted to inform you that a Petition entitled “Effective Thyroid and Adrenal Testing, Diagnosis and Treatment” has been submitted by Scottish residents Sandra Whyte, Marian Dyer and Lorraine Cleaver (all members of TPA) and this Petition will be discussed initially, in Parliament on Tuesday 5 February 2013.

    The details of this Petition can be read here and you can watch the live debate of this initial discussion here .

    After the initial discussion on Tuesday 5 Feb.2013, the debate will be open to all who wish to submit comment and/or present further evidence for those who wish to support our cause.

    TPA is strongly supporting this Petition by presenting the Scottish Parliament with extra evidence, supported by references to research studies.

    It is vital that the Scottish Parliament is made as thoroughly aware as possible that the success of this Petition would have a crucial and positive impact on the lives of tens of thousands of their fellow citizens (and potentially millions worldwide) - so please do whatever you can to help.

    www.tpauk.com
    Til alle norske og danske stoffskifte-pasienter, anbefaler vi boken STOP stofskiftevanviddet, skrevet av verdens ledende pasient-aktivist Janie Bowthorpe, som i 2005 grunnla nettstedet Stop The Thyroid Madness. Boken er utgitt på dansk i 2014. För alla svenska hypotyreos-patienter, rekommenderar vi samma bok, översatt till svenska med titeln Stoppa sköldkörtelskandalen (2012). Til alle gode leger, og pasienter som ønsker å lære mer av "the right stuff", anbefaler vi boken Stop The Thyroid Madness II (2014) med bidrag fra 10 leger MD. I Skandinavia, definitivt de to beste og mest nyttige bøker for hypotyreose-pasienter, for deres familier og venner, og for deres leger.

  2. #2
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    Standard Sv: Kampen om hypothyroide ! Hvorfor kan britene, men skandinavene kan ikke?


    7. februar 2013:

    Thyroid Petition - Scottish Parliament. Link to Video of Initial Debate


    Further to my last message about the Thyroid Petition lodged with the Scottish Parliament Petitions Committee and the initial discussion that took place on Tuesday 5 February 2013, I am now delighted to give you a link from the Scottish Parliament News and Media Centre so you can watch and listen to what took place. http://www.scottish.parliament.uk/ne...tre/41424.aspx (or below/red. Mod)



    The outcome, as far as I am concerned, is excellent - as you will find out for yourself, and Sandra Whyte and Lorraine Cleaver presented the plight of those being left to suffer with symptoms of hypothyroidism brilliantly. They both responded extremely well to questions asked by several of the MSP's.

    When I first watched the video, I felt extremely emotional (quite close to tears) listening to their statements, and I could feel the shock that rippled around Room 4 as the MSP listened to the reason why such a petition had needed to be submitted.

    The Scottish Parliament will be writing to Dr Stefan Sjoberg from Sweden, who was involved with the lowering of the TSH range there to 0.3 to 2.5 and to Dr Lindner from Pennsylvania (read his great explanation of 'Why Doctor's Don't Get It' http://hormonerestoration.com/Docs.html and the various myths etc. He covers all the hormones, not just thyroid.. His web site is here http://hormonerestoration.com/ and Dr Stefan Sjöberg at Karolinska Institutet, Sweden.

    It was agreed that World Health Organisation be asked to respond because it was recognised this was not just a Scottish Problem, this was a universal problem.

    TPAUK along with other oganisations/individuals are to be approached and as far as I understand it, they will be given a set time in which to respond, after which time, for those interested in responding to any comments made, or who wish to produce further evidence to support the petition - you can do this here http://www.scottish.parliament.uk/pa...ees/29869.aspx. The BTA, BTF and/or TPA have not been asked to respond at this stage, but TPA will be responding at a later stage in the debate. I want to see what the RCP has to say before moving forward.

    I will send out this link to all our members, TPA medical advisers, all UK endocrinologists, Heads of all Medical Schools in the UK , various thyroid organisations and owners of thyroid web sites and thyroid forums throughout the world (and all those who work outside of mainstream medicine) to give all the opportunity of taking part too. For everybody, space will be limited, but from all accounts, is still generous and all comments and evidence will be taken into consideration.

    Last year was a long year, but this year has started well - and let's hope that, at last, this is the "end of the beginning"!

    Sheila
    www.tpauk.com
    Til alle norske og danske stoffskifte-pasienter, anbefaler vi boken STOP stofskiftevanviddet, skrevet av verdens ledende pasient-aktivist Janie Bowthorpe, som i 2005 grunnla nettstedet Stop The Thyroid Madness. Boken er utgitt på dansk i 2014. För alla svenska hypotyreos-patienter, rekommenderar vi samma bok, översatt till svenska med titeln Stoppa sköldkörtelskandalen (2012). Til alle gode leger, og pasienter som ønsker å lære mer av "the right stuff", anbefaler vi boken Stop The Thyroid Madness II (2014) med bidrag fra 10 leger MD. I Skandinavia, definitivt de to beste og mest nyttige bøker for hypotyreose-pasienter, for deres familier og venner, og for deres leger.

  3. #3
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    Standard Sv: Kampen om hypothyroide ! Hvorfor kan britene, men skandinavene kan ikke?


    8. februar 2013:

    Thyroid Debate - Scottish Parliament.

    WE NEED YOU NOW - MORE THAN EVER!


    It is VITAL that the Scottish Parliament know the enormity of the problems that millions of people worldwide are facing in their often futile endeavour to get a proper diagnosis and treatment for their specific needs. Without each and everyone of us 'doing our bit' to help ourselves and to help all those others being left to suffer, the change we need will never come about.

    If you have not watched this amazing video to see what is happening - then please do so http://www.scottish.parliament.uk/ne...tre/41424.aspx. (or below/red.Mod)



    Please support this initiative (wherever you live in the world) by sending an Email to petitions@scottish.parliament.uk with the simple title of 'Thyroid Petition. Write your brief personal experiences regarding how difficult it is to get a correct diagnosis and/or to receive proper medication. You may wish to include any relevant research and/or documentation regarding thyroid and/or thyroid related health problems.

    You will see from the video that The Scottish Parliament appear to be already on our side - and they are listening, but we need them to know how many millions of us are affected by mismanaged care so that they can make necessary provisions. They are already setting up a Working Party specifically to deal with this problem.

    Please do remember that the Scottish Parliament are likely to be sent thousands of messages regarding this subject, so, if you want them to read your Email, keep it as brief as possible.

    Thank you so much for your support.

    Sheila

    www.tpauk.com


    Read more:
    Thyroid Petition Submitted to the Scottish Parliament



    Highly related:
    Our Holy Miracle of the Infallible TSH test!
    Why Isn't My Thyroid Medication Working?
    "Your TSH is normal", says Anthony Weetman
    Til alle norske og danske stoffskifte-pasienter, anbefaler vi boken STOP stofskiftevanviddet, skrevet av verdens ledende pasient-aktivist Janie Bowthorpe, som i 2005 grunnla nettstedet Stop The Thyroid Madness. Boken er utgitt på dansk i 2014. För alla svenska hypotyreos-patienter, rekommenderar vi samma bok, översatt till svenska med titeln Stoppa sköldkörtelskandalen (2012). Til alle gode leger, og pasienter som ønsker å lære mer av "the right stuff", anbefaler vi boken Stop The Thyroid Madness II (2014) med bidrag fra 10 leger MD. I Skandinavia, definitivt de to beste og mest nyttige bøker for hypotyreose-pasienter, for deres familier og venner, og for deres leger.

  4. #4
    Medlem siden
    Oct 2006
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    Unhappy Everything to date failed including petitions and solicitations to various Members...


    I januar i år, britiske Jacqueline Falkowski har sendt et brev til Mr David Stewart MSP, Public Petitions Committee, Scottish Parliament i Edinburgh, UK.

    Hun indleder sit brev med disse ord:

    If you are reading this letter I have successfully ended my life after an interminable battle with hypothyroidism. Until doctors learn to listen and work with the patient instead of trying to control the patient there will be many more deaths after me, as there have been many before me.

    I have been caused tremendous unnecessary suffering and irreparable damage to my body and brain from being left undiagnosed for at least 26 years, but was not diagnosed at the time because my Thyroid Stimulating Hormone (TSH) never went over 10, and then I was put on the wrong thyroid hormone (TH) therapy, thyroxine (T4) instead of liothyronine (T3), because T4 is the only accepted form of TH therapy in the UK, and because GPs and endocrinologists do not recognise conversion issues or peripheral cellular resistance to TH or T3 deficiency - all of which I have and which the TSH doesn‘t pick up - and then being treated for years on an inadequate amount of TH (T4-replacement only) therapy.

    I have had an enormous uphill battle trying to get doctors to believe me and take my symptoms seriously. My GP was adamant that my thyroid was fine and my symptoms were all in my head. When my slim size 8 frame started to expand to a size 14 (now 20), I was reprimanded for eating too much and not exercising despite being a healthy eater, a sailor and extremely active. My GP continued prescribing medications for each individual hypothyroid symptom I was suffering, which must have cost the NHS a fortune. He even went so far as to tell other doctors and consultants that he believed my symptoms were all functional and caused by a psychiatric disorder, even though I had never been diagnosed with one. It was humiliating and frustrating!


    (...)

    Everything to date failed including petitions and solicitations to various Members of Parliament in the UK, including my own MP, Bob Neill, the Royal College of Physicians, British Thyroid Foundation, British Thyroid Association, Society for Endocrinologist, Society of Clinical Biochemists, each and every endocrinologist and a plethora of letters to the General Medical Council who do not wish to embrace this matter.

    You are our only hope right now. You hold the future and lives of hundreds of thousands of thyroid patients in the UK (and millions worldwide) in your hands. I hope that the petitions committee will take heed from my letter that the plight of thyroid patients is very real and a truly desperate one and that you will urgently consider heading your own inquiry to address this parlous situation. You cannot allow thousands of patients in Scotland to be abandoned to poor quality existence or suicide because of inexplicable obduracy among the endocrine profession and the medical establishment.

    If the Scottish Parliament can initiate change in the diagnosis and treatment of thyroid disease in Scotland thus highlighting the global magnitude of this crisis affecting women, it may encourage other countries to carry out their own investigations into this terrible scandal and ultimately save millions of lives.

    Yours sincerely

    Jacqueline Falkowski

    Hele brevet kan læses hos Sheila Turner, på hjemmesiden Thyroid Patient Advocacy i UK.

    Det kan blive en ganske lærerig oplevelse, idet de britiske og de skandinaviske endokrinolog-organisationer samarbejder ganske tæt med hinanden, og alt som sker for lavt stofskifte-patienter i UK, nøjagtig i samme udstrækning sker også hos os i Skandinavien. Skandinaverne skriver bare sjældent breve...

    Kun guderne ved, hvor mange skandinaviske syge måtte opgive livet, mens endokrinologerne bare fortsætter med at oplære fastlæger i tal-lege, i stedet for at udøve medicin.
    • Tak for at du læste mit indlæg.
    • Vil du vide lidt om hvad jeg står for, er du velkommen til at læse min signatur her

  5. #5
    Medlem siden
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    Unhappy Sv: Kampen om hypothyroide ! Hvorfor kan britene, men skandinavene kan ikke?

    Kevlin
    ... bare fordi du er paranoid: så betyr ikke det at de ikke er ute etter deg!!
    Lavt stoffskifte - Erfa Thyroidfra slutten av 2009
    Min første halve pille med Erfa

  6. #6
    Medlem siden
    Dec 2008
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    1,361

    Lightbulb Public Petitions Committee - Scottish Parliament: 9th February 2016


    Public Petitions Committee - Scottish Parliament:
    9th February 2016



    Consideration of a continued petition: The Committee will consider—PE1463 by Lorraine Cleaver on effective thyroid and adrenal testing, diagnosis and treatment and take evidence from—Maureen Watt, Minister for Public Health, Alpana Mair, Deputy Chief Pharmaceutical Officer, Elizabeth Porterfield, Head of Strategic Planning and Clinical Priorities and Colin Urquhart, Team Leader, Strategic Planning and Clinical Priorities, Scottish Government; Professor Graham Leese, Consultant and Honorary Professor in Diabetes and Endocrinology, NHS Tayside and CSO Speciality Adviser.
    Hvis du har noen spørsmål knyttet til bruk av vårt forum - les OSS/FAQ.

  7. #7
    Uregistrerte Gjest

    Standard Sv: Public Petitions Committee - Scottish Parliament: 9th February 2016

    Professor Graham Leese, Consultant and Honorary Professor in Diabetes and Endocrinology, NHS Tayside and CSO Speciality Adviser
    WOOW!! Som denne professor - en Stor Mand i det britiske sundhedsvæsen - bliver fanget (39:30 inde i optagelsen) i den selvsamme type af "anekdoter", han ellers anklager for at være de udsagn om T4-only mangler og fejl rapporteret af læger og patienter. Når behandling med Thyroid eller syntetisk T3 lykkes, er det bare ikke andet end "anekdoter" og resultat af "kvaksalveri" siger han.

    Det er tydeligt at denne professor er vant til ikke at blive draget til regnskab for sine udtalelser og påstande, men det er netop det som sker her, og arrogancen bliver her så åbenlyst udstillet til alles skue at det næsten er synd for ham.

  8. #8
    Medlem siden
    May 2010
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    Standard Sv: Kampen om hypothyroide ! Hvorfor kan britene, men skandinavene kan ikke?

    Jeg må bare si - jeg ELSKER den mannen som setter henne på plass.

    Tusen takk for kommentaren, "Uregistrerte" - for at jeg fikk sett det der.
    Diagnostisert etter "depresjonsymptomer" - mai 2010 & smgjs private side ...
    -- og det som er deilig er at NÅ er avataren min ironisk

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