I suggest a campaign about ...

Fight for those with M.E

A suggest a campaign to fight for those with M.E/CFS
1) To get the NICE guidelines rewritten, and replaced with the Canadian guidelines.
2) To get the NHS to view M.E & CFS as two separate illnesses in keeping with the World Health organisation classification
3) Fund more research into biomedical causes, especially XMRV.

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    Anonymous shared this idea  ·   ·  Flag idea as inappropriate…  ·  Admin →

    43 comments

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      • Rosemarie EastRosemarie East commented  ·   ·  Flag as inappropriate

        It's about time this debilitating illness was taken seriously.

        As Shaz commented....too tired to put any more words together.

      • flyfly commented  ·   ·  Flag as inappropriate

        We are excluded from research studies if we have any biomedical evidence of our physical disease.

        These same tests to check for abnormalities are denied to us by the NHS.

        There are over 4000 papers proving physical illness, but because people with any of these bio-markers are excluded from gov research our gov says they dont exist.

        Please see that this is an orchestrated campaign of denial and denigration of desperately sick families for decades, and help us get tests that would be available to us if we weren't labelled with this illness..

      • Barbara KellBarbara Kell commented  ·   ·  Flag as inappropriate

        The NICE guidelines are totally useless to those suffering from ME. This form of treatment is at best useless and at worst dangerous and can lead to deaths. Wake up and smell the coffee. Who is running a campaign against ME patients and why are the question we need to be asking.

      • pollypolly commented  ·   ·  Flag as inappropriate

        Funding biomedical research is a must . That is where the answers to this awful illness lie . I have had so many things wrong in my blood since getting ill with this illness , the only way to find out why is through biomedical research . blood results do not lie ! The canadian guidlines are also far more stringent than the fukuda and oxford which are often used in the UK . The niceguidelines need reviewing asap . they are not fit for purpose in their current state . Everything regarding me/cfs in the UK at this present time needs reviewing . Patients are suffering they deserve better than this .

      • Nicholas CopleyNicholas Copley commented  ·   ·  Flag as inappropriate

        In the light of current research suggesting a link to retrovirus activity (XMRV see Wittemore Peterson Institute) it's time the psychological lobby (including NICE) was seriously challenged.

      • But You Look AlrightBut You Look Alright commented  ·   ·  Flag as inappropriate

        The public are being deliberatley misled about M.E. The biomedical reserch done in other countries shows overwhelmingly that it is a devastating neurological condition with the average age of death at 57.The political background to covering up this illness is truly shocking and deliberatley designed to avoid having to pay out in long term disability and treatment costs. Patients are left housebound/bedbound, too ill to get to doctors and are condemned to live in an isolated hell.
        Look this up to see how governments, doctors and insurance companies have colluded for over 20 years to denigrate this illness, at the expense of possible contamination of the blood supply and an ever growing number of cases. It is now the most common reason for children to have long tem absence from school yet the govet still refuse to make it a notifiable disease

        .http://www.meactionuk.org.uk/Wessely_Woodstock_and_Warfare.htm

      • marymary commented  ·   ·  Flag as inappropriate

        I can't agree more strongly with all of the above suggestions. I have suffered the horrors of this disease for 26 years and still the the debate goes on...... I am now 59 years old and during M.E. years I had a lovely daughter with great difficulty, lost my parents and a beloved brother and still I remain sane and not a session of CBT in sight. Although a silent army, we must all be incredibly strong.

      • Alf MartinAlf Martin commented  ·   ·  Flag as inappropriate

        My wife has suffered from ME for 27 years. Tried through normal NHS channels, without success, for help. Private treatment once a week of acupuncture helps but is extremely expensive. We need education and change of GPs and doctors to help the 250,000 sufferers.

      • Suzanne SpearingSuzanne Spearing commented  ·   ·  Flag as inappropriate

        I think the treatment in the UK of ME is scandelous immoral & neglectful.No medicines for all the symptom control & only offered Psyciatric therapies which are very basic no thorough testings to find abnormalities & Consultants saying you need a Psyciatrist.It is beyond unbelievable

      • Nicola ReissNicola Reiss commented  ·   ·  Flag as inappropriate

        An estimated 250,000 people in the UK have ME - more than those with MS, yet no official records are kept and doctors are instructed not to carry out tests that would help diagnosis. A change in the NICE guidelines is urgently needed.

      • Clare WillmottClare Willmott commented  ·   ·  Flag as inappropriate

        I am 23 and have been stuck with this illness for ten years. XMRV research has been the first hope in all that time. Change couldn't be any more important to us, and its time.

      • Graham Power.Graham Power. commented  ·   ·  Flag as inappropriate

        I have paid my NI contributions & taxes in the UK for 45yrs,and still continue to pay tax in the UK, but because i have retired in Australia on a Visa,i am told that i am not entitled to the Pension increase, can somebody tell me where my human rights are !!! we voted you in hoping you would help us expats.

      • Mrs Fiona Hodgkiss.Mrs Fiona Hodgkiss. commented  ·   ·  Flag as inappropriate

        ME is a very serious problem, where the fatigue and other symptoms affect every area of your life. Treatment from NHS GPs is minimal. They may understand that you are poorly, but the treatment is to get you to manage your condition, by taking rests and pacing yourself, rather than any medical approach, that would get your condition to improve, so you need less rest.

      • LisaLisa commented  ·   ·  Flag as inappropriate

        I've had an undiagnosed form of chronic fatigue since I was 19. It is debilitating to the extent I need 24 hour care. I get no treatment from the NHS and have to fight very hard to get state support. I'm trapped in a void.

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