ME sufferer calls for more research into her illness

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Thursday, May 28, 2009
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This is Bristol

A teenager who has suffered chronic fatigue for more than 10 years wants more to be done to find the cause of her illness.

Helen Wood, of Thornbury, was diagnosed with ME in June 2005, but had suffered symptoms since she was about eight years old.

The 19-year-old said she feels exhausted all the time and suffers constant aches and pains.

Because of the condition she was forced to leave school before completing her GCSEs and cannot work.

ME is a term that describes several different illnesses where symptoms include severe fatigue, painful muscles and joints, poor memory and concentration. Experts are not sure what causes ME but it is usually triggered by viral infections and can also follow operations or accidents.

Miss Wood had suffered glandular fever when she was eight and it is now thought that the virus triggered her ME.

Her mother Liz, said the diagnosis in 2005 was a "relief" as it finally gave a reason for her daughter being unwell.

The former Castle School pupil had a tutor at home for 18 months after she left school, but even three sessions a week were too much for her.

She said: "I am very angry and I wish I didn't have ME. I can't do what everyone else does and wish I could but I can't.

"I suffer fatigue and lots of aches and pains. Most days are bad and I have been feeling like this for 11 years. I would like to get better and would like more research to be done to find out why this happens."

Mrs Wood, 50, also has a 21-year-old son, Christopher who has Asperger's syndrome, said: "Helen is very restricted and has to pace herself. She cannot walk from our house into Thornbury. She is very isolated and does not see any of her friends from school."

There is currently no treatment available for ME sufferers although there are therapies available, but Mrs Wood said they tend to be expensive and there is no guarantee they work.

Mrs Wood, a carer, said: "ME is a horrible illness. People don't really understand and It is very hard to explain to people what it is actually like. It is not something that is 'in the mind'."

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  • Profile image for This is Bristol

    by WTFAC, USA

    Sunday, June 07 2009, 5:17PM

    “Mr. Hard Worker,

    As one with a degree in psychology, it appears to me that you suffer from low self esteem. Generally speaking, people who harshly and ignorantly attack others (children, no less) do so in order to try to make themselves feel superior. I would recommend getting checked for depression.

    As for M.E. -- it is a neurological disease classified as such by the World Health Organization. It is often caused by a virus, and also affects the immune system and endocrine system. There are over 5,000 published studies now showing that this is a clear physical disease. It is not in the least a psychiatric one.

    Here in the U.S., the CDC has acknowledged it as a severe and serious illness that can be as debilitating as late stage AIDS, lupus, cancer and end stage renal failure.

    People with ME are hard workers as well. Most were once highly functional, educated successful people before becoming ill. They still are, except they are now severely sick. They fight harder every day than I suspect most have done have in a lifetime.

    Sorry you are so confused. Perhaps next time you will seek knowledge before making false judgments. It may help with your self esteem as well. Hope you can get help for that.

    Best wishes and kind regards.”

  • Profile image for This is Bristol

    by Liz, Bristol

    Sunday, June 07 2009, 1:02AM

    “Its so sad to see that there are still people so ignorant out there as Mr Hard Worker!!
    Ive had M.E for 8 years now and far from having a nice lazy time as he would like to believe, im in constant agonising pain, and often cant get out of bed or walk. As well as a huge list of other symptoms including passing out everytime i stand up!
    As everyone else was enjoying a nice saturday i had to take extra painkillers and go to a disability show to find myself a electric wheelchair (which i have to pay for by the way!), a lovely day for a 28 year old! (not)
    As for leeching off the benefits system and NHS. Have you ever seen one of their questionaires? And do you know how hard it is to qualitfy for anything? In fact most people with M.E cant get any kind of benefit because of ignorant people like you!! And therefore live in poverty.
    If you actually read a bit about this illness before making comments you would see that doctors have infact already proved and confirmed it as a physical disease with gene markers. That it has killed several people and it appears on their death certificates and they are not far from a test for it.
    Now as far as im aware laziness and depression doesnt kill you!!!!!!!
    Doctors have reported that M.E can infact often diminish patients' quality of
    life to levels lower than that of cancer, MS, HIV and
    lupus.
    Now with all this mountain of evidence that can be easily found on the net, which you obviously had no idea was there?! maybe you will rethink your comments and attitude towards the very sick people out there that need support not hinderence! :-p”

  • Profile image for This is Bristol

    by Laurence Swift (retired vet), Herne Bay, Kent. CT6 6EQ

    Sunday, June 07 2009, 12:48AM

    “"ME is a term that describes several different illnesses" - this statement is incorrect. It is in fact the term "CFS" (for Chronic Fatigue Syndrome) as used by misguided medics in the UK that describes several different illnesses. "CFS" is a wastebasket diagnosis for doctors who fail to take the trouble to investigate a patient properly. It encompasses glandular disorders such as hypo-thyroidism, undetected diabetes, undiagnosed cancers, true depression, and several infectious diseases such as Lyme Disease, as well as the distinct infectious disease known as M.E. (Myalgic Encephalomyelitis). However the NICE Guidelines actively dissuade doctors from investigating and reaching a proper diagnosis - which is crazy, as the cost to the taxpayer of maintaining about a quarter of a million people registered disabled due to ME is far, far greater than the cost of sorting out those people with other conditions which may be treatable. Plus a decent budget to investigate the true cause of ME and find a reliable test and if possible, some treatment. At present all ME treatments are symptomatic - headache pills, pain killers, sleeping tablets. (Anti-depressants have no place at all, and in fact may be counter-productive due to their increasing depression by causing effects such as impotence (speaking for myself!)
    It must be said that even well-known diseases like Lyme Disease are very difficult to test for
    as our British tests based on testing blood for antibodies are likely to prove negative even in the face of obvious clinical signs, the British medical establishment prefers not to believe the better test results from more advanced and accredited laboratories in the US and Germany (it's cheaper to let people languish and die young rather than actually cure them and get them back to taxpayer status).
    "Lyme Disease" is called that because it was "discovered" in a town called Lyme in Connecticut. The governing people of this US state have just passed a law making it legal for doctors to properly treat people with Lyme Disease. The sad thing is that this law should never have been necessary, but the regressive medical high-ups have persecuted doctors who tried to use their medical judgement, threatening to "strike them off" if they insisted on treating Lyme patients in the manner necessary.
    There is some hope for ME - just recently, some Dutch scientists have found a new kind of prion in People With ME (PWME) which is related to the BSE (Mad Cow Disease) brain bug, and they have also developed a simple cheap urine test for ME that tests for Hydrogen Sulphide which they reckon is present in large quantities in severe ME patients.”

  • Profile image for This is Bristol

    by j. s., durham

    Saturday, June 06 2009, 5:29PM

    “What an ignorant person hard worker is. It shows people don't have to be clever to work hard. Clever people are cautious of their opinions. I am a scientist who lost my life to M.E 24 years ago and have had to "leech off" the benefit system for 22 yrs although the NHS has done nothing for me.”

  • Profile image for This is Bristol

    by HP, Somerset

    Wednesday, June 03 2009, 10:50AM

    “M.E. has been classified as a neurological illness by the WHO since 1969, & the UK government have stated they accept it is a physical illness.

    Despite this, all research and treatment funding has been given to the psychiatric profession who insist, against all medical evidence, that it is an 'aberrant illness belief'. Sufferers are given totally inappropriate psychological treatments that have been found to actually make them worse.

    There are now over 40,000 studies proving it to be a physical illness and there have been a number of deaths from M.E. in which pathogens have been found in the heart, central nervous system, guts and muscles at autopsy.

    80% of M.E. sufferers never recover and a quarter are so badly affected they are house or bed bound, some living for decades in darkened rooms unable to walk, talk or swallow. Recent research has found a previously undiscovered prion in these profoundly affected patients. Prions are the cause of BSE.

    I wish young Helen well, but until the UK psychiatric profession release their stranglehold on this physical illness there will never be effective treatment in this country.

    it is worth noting that the psychiatric profession used to insist that MS was 'hysterical paralysis' until a diagnostic test was discovered . M.E. sufferers in the UK desperately need a diagnostic test to be developed, & this needs funding to be redirected away from psychiatric research into biomedical research.

    ----------------------------------------

    WORLD HEALTH ORGANISATION (W.H.O.) DEFINITION OF M.E.
    ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization's International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the "fatigue" of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological clinical disorder.”

  • Profile image for This is Bristol

    by Laura, Whitchurch

    Friday, May 29 2009, 6:01PM

    “Mr Hard Worker you need to get a life than have a rant at myself and my daughter.

    My daughter has 5 doctors who she see's on a regular basis who have all stated she has CFS/ME. She not only has CFS/ME but Extreme Joint Hypermobility which causes her a great deal of pain night and day.

    I bet Mr hardworker doesn't even work hard but sits on his rear end all day.

    I Mr Hard Worker bring my children up to be respectful to other people. perhaps if your parents bought you up well enough you'd have a wider view on life not just your narrow minded bigot self view.”

  • Profile image for This is Bristol

    by jane, whitchurch

    Thursday, May 28 2009, 4:26PM

    “whata sorry person hardworker is perhaps they have had man flu Iam the gradmothe of the 6 yr old above and what she and her family go through is agony to see An 6y r old with depression,joint pain,not able to do what any other child can do no holidays no play in the park because she is so exhauted it so heart
    breaking It not only affects her but her to brothers so hard worker perhaps ignorance is blissand you must be so blissfull.Helen hope you are on a good day and you can be brave good luck from a family who do know what you are going through”

  • Profile image for This is Bristol

    by Laura, Whitchurch

    Thursday, May 28 2009, 4:13PM

    “To Mr Hard worker,

    Thank you for your opinion but an old saying is "an opinion is like a cl!t every c*nt got one"

    As for CFS/ME my daughter is 6 and has had it since she was 3, when she is bad there is nothing she can do and she will cry whilst her brothers are out playing. It isn't just about being tired but has many symptoms. To watch a young girl become more depressed over time is horrible.

    CFS/ME does exsist and is real.

    You Mr Hard worker should spend a day in my daughters shoes and then you would soon change your mind on the subject.

    Oh by the way I'm also a "Hard worker!"”

  • Profile image for This is Bristol

    by Hard Worker, Bristol

    Thursday, May 28 2009, 10:43AM

    “ME, commonly known as "lazyititus". A made up "disease if ever there was one.

    These bone-idle people are just leeching off of the NHS and benefit system.”

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