scientists develope a test for M.E

Discussion in 'Fibromyalgia Main Forum' started by flossyfudleFran, May 28, 2009.

  1. hi all,
    ive just been scrolling through the sky tv,news channel,(on my actual telly),and i read this piece on there.

    ive been to their online site,and theres no mention of this test on there.none the less,if its true about this test,im getting my grown up kids tested for M.E,as i have concerns,especially for my son.

    heres what it said...


    scientists say they have developed a £13 home-testing kit,which they claim will help identify people suffering from myalgic encephalopathy (M.E).


    thats all it said,but if any of you find out any more information on this test,will you let me know?

    ill keep my eyes peeled for more info in the future, and post it here.

    but a test for M.E,finally we are getting somewhere.

    lets hope in our life time, we get some sort of treatment to get rid of,or calm, this hidden beast,so we can finally move on with our lives and feel better in ourselves.

    love fran
  2. simpsons

    simpsons Member

    its good to be cautious and it will need further testing and research. i wonder that prof d would make such a statement and press release that would be so damaging to the ME community if it were untrue.

    on the note that if people take the test who think they have ME and it comes back negative. assuming that it is a credible test then maybe that will free those people up to investigate that they don.t have illnesses that mimic ME such as celiac and lymes.

    it is always a concern that people are lumped in the cfs wastepaper basket who have serious and life threatening treatable illnesses. It is a tragedy to miss these illnesses

  3. hi nink and all,

    many thanks for posting the information here.

    today i went onto the ME association web site,and they have commented on this home test for can only be bought abroad and isnt avaiable on the nhs.if you do have ME as the test might say you have,you cant get treatment at present from nhs doctors.

    the advice from the site is,keep a open mind, and wait for more research to be done on this test, and the claims that its a gut and mercury exposure issue.

    so i guess for now we should wait a while and see how things develope.

    apparently if you are bedbound you could get a possitive test result.if like me you arent bedbound but have fluctuating fatigue, you might get a negative test result.that did baffle me a bit.

    anyway many thanks for taking the trouble to post a reply to me.

    take care,love fran.
  4. Khalyal

    Khalyal New Member

    Posted on Co Cure, reposted with permission:

    May be reposted
    >> Medical tests for a specific disease need to be an accurate and
    > reproducible
    >> means of establishing the unique pathophysiology of the disease concerned
    >> I have a scientific background and I have studied the contents of the
    >> presentation made by Professor Kenny de Meirleir. His hypothesis is that
    >> high levels of hydrogen sulphate in the urine may possibly be diagnostic
    > of
    >> the presence and or overgrowth of relatively certain common microbes
    > living
    >> within the gut. This he then claims produces the symptoms of Myalgic
    >> Encephalomyelitis.
    >> This is not a new idea; it is a new variant on the Â"leaky gutÂ"
    > hypothesis
    >> that has been around for some time and has been associated with the
    > Candida
    >> overgrowth hypothesis of ME which produces the same kind of Â"leaky GutÂ"
    > in
    >> which candida travels through the gut and invades the body through the
    >> gut
    >> walls. This hypothesis has been largely discredited although it still has
    >> its supporters.
    >> The current hypothesis follows much the same lines, that the micro
    > organisms
    >> that ought to be contained within the gut are somehow able to penetrate
    > the
    >> walls of the gut and end up just about everywhere in the body including
    > the
    >> brain.
    >> There are a number of problems and issues here which can be summarised
    >> but
    >> are not limited to :-
    >> 1] How can such organisms penetrate the gut wall and invade
    >> the
    >> body in the manner claimed, as this was the Achilles Heel of the previous
    >> Candida hypothesis?
    >> 2] Assuming that it is possible for these micro organisms to
    >> invade the body in the way Prof. Kenny de Meirleir hypothesises, then the
    >> person would be suffering from a very nasty case of infection by one of
    > the
    >> micro organism concerned, and not ME, since all the micro organisms cited
    > by
    >> Prof. Kenny de Meirleir are already known to medicine and medical
    >> science,
    >> and this would be picked up by a battery of microbiological tests which
    >> would confirm the presence of a bacterium as being the cause of the
    >> infection suffered by the patient. Not all the organisms concerned are
    >> not
    >> that easy to treat and some can be resistant to antibiotics, but
    >> diagnosis
    >> and treatment are relatively strait forward. This leads to the academic
    >> scientific question as to whether certain levels of some of these
    >> microbes
    >> live in the gut anyway, and speculation as to what would lead them to
    > cause
    >> an infection.
    >> 3] That in order for a given specific disease to be produced
    >> through the invasion of the body by a specific microbe, there must be an
    >> equation made between the microbe responsible and the disease. One cannot
    >> have the same disease produced by an unspecified number of certain
    > specified
    >> and also by other un-named and or un-specified microbes because this
    >> would
    >> simply be termed a general bacterial infection. It would not be ME.
    >> 4] That in order for a diagnostic test to detect the presence
    > of
    >> a given single microbe or family of microbes a given test must detect the
    >> microbes concerned in the presence of other microbes which may be
    > harmless,
    >> or not the subject of the test, and therefore the test will not produce
    >> false positives results when applied to samples taken from patients.
    >> There
    >> is no indication that the proposed test will do this.
    >> 5] That in order for a diagnostic test to detect the presence
    > of
    >> a given microbe or family of microbes it is necessary for the test to
    > have a
    >> given provable and reliable sensitivity to the organism it is intended to
    > be
    >> a test for so that medics and researchers can have confidence that if the
    >> test says that there is nothing there, then that is indeed the case. This
    > is
    >> to avoid the problem of false negatives. There is no information
    > whatsoever
    >> from Prof. Kenny de Meirleir on this subject, so I can only assume that
    > the
    >> proposed test does not meet the stringent standards of any national or
    >> international Health Board. This is presumably why the test is not being
    >> marketed to doctors or to governments or Health Boards, but only to
    >> individuals.
    >> 6] That in order that for a diagnostic test to be accepted as
    > the
    >> means of diagnosing a given disease it must be accurate, and it must be
    >> reliably accurate to a very high standard so that again medics and
    >> researchers can have confidence that the test really does do what it
    > claims
    >> it can. Again, there is no information whatsoever from Prof. Kenny de
    >> Meirleir on this subject, so I can only assume that the proposed test
    >> does
    >> not meet the stringent standards of any national or international Health
    >> Board. This is presumably also why the test is not being marketed to
    > doctors
    >> or to governments or Health Boards, but only to individuals.
    >> Lastly but by no means least, the theory behind the test must be based on
    > a
    >> unique aspect of the pathophysiology of the disease because only then can
    >> the equation between a given specific microbe and a given specific
    >> disease
    >> be made. In order to be in a position to make this equation the theory
    > which
    >> underpins the use and application of any diagnostic test must account
    >> directly for the disease process itself and not be a consequence or
    > artefact
    >> of that disease process that could be produced in other ways.
    >> I consider that Prof. Kenny de MeirleirÂ''s hypothesis and Hydrogen
    > Sulphide
    >> diagnostic test based upon it fails this test on the grounds listed above
    >> and for the simple reason that he has not accounted for the well known
    > fact
    >> that patients with ME/CFS/CFIDS are known to have compromised immune
    >> systems. This would mean that as with HIV/AIDS patients who also have
    >> compromised immune systems that there is very considerable likelihood
    >> that
    >> in ME/CFS/CFIDS patients the presence of the microbes that Prof. Kenny de
    >> Meirleir observes and the numbers in which he observes them are simply
    >> due
    >> to the secondary consequences of having ME/CFS/CFIDS as a result of
    >> opportunistic infections by microbes that would largely be kept at bay by
    >> the bodyÂ''s immune system in a healthy person.
    >> I note that Prof. Kenny de Meirleir has been a controversial figure when
    > he
    >> served as a Board Member of the American Association for Chronic Fatigue
    >> Syndrome, and editor of The Journal of Chronic Fatigue Syndrome put out
    >> by
    >> The Haworth Medical Press and that the Board of The National CFIDS
    >> Foundation, Inc. (NCF), in America, called for his resignation as the
    > result
    >> of his previous research activities.
    >> I also note that Prof. Kenny de MeirleirÂ's recent work on this matter is
    > not
    >> published in a Peer Reviewed Journal, and that he does not appear to have
    >> any plans to publish his work in such a journal, possibly because his
    >> work
    >> on this matter may not reach the standards required by such journals.
    >> I further note that Prof. Kenny de Meirleir is one of the Editorial Panel
    > of
    >> the proposed new Journal of Fatigue where presumably he would be able to
    >> publish this work as presumably this journal does not have the same
    >> status
    >> and standing as a regular Peer Reviewed journal, and he would be standing
    > in
    >> favourable judgement over his own work.
    >> In view of the entirety of the above, my advice would be to think long
    >> and
    >> hard before committing £13 or any other sum of money to buy the home
    > testing
    >> kit proposed by Prof. Kenny de Meirleir or on whether to have the test
    >> performed in any other way, and I would be very wary indeed of any
    > treatment
    >> options that may be advanced by Prof. Kenny de Meirleir on the basis of a
    >> positive test result, or the consequences of a negative test result.
    >> Ciaran Farrell
    >> Myalgic Encephalomyelitis sufferer
  5. hi all,
    many thanks for replying to my post as regards the ME home test.

    i myself do feel that the fibromyalgia causes much of my fatigue,especially when i come into contact with viruses out in the public (i work in a school).

    ive recently been very ill with breathing problems and had a bad chest infection,then got a secondary infection on top of that.

    i was given antibiotics and steroid tablets.

    i was amazed at how quickly the steroid tablets had me back on my feet (the next day),although i was given a week off work by the doctor,as i was extremely fatigued and trembling,unfit for any sort of work.

    im back at work now,and already the teachers are showing signs of having sneezing boughts,im hoping its enviromental allergies and not the start of the dreaded flu.

    anyway,my doctor said id caught a virus, then caught another virus on top of that id say that maybe as i get older, and have had fibro most of my life,cfs for i think 15 years now..that my immune system is definately weaker now.

    my lungs seem weak,and my asthma is troubled just now. traffic fumes are extremely bad for me right now,and so i believe that my body was shutting down again,it always takes my legs first, making me bedbound.

    i just wonder if ive had this illness all of my life,but was young, and too busy to notice it back then.

    im active,slim and thought i was fit,but a cold virus put me back in a bedbound state,then another virus attacked me.

    it sort of reminds me of when i first got ill with the cfs/ME.

    id had a baby,lost alot of blood.seemed a bit sickly.plodded on.

    had a polio vaccine.

    and a few years later i got glandular fever and was knocked for six.

    ive just never been strong in the immune system department since then.

    anyway,im slowly feeling better after that chest infection.

    im sadly now having to have treatment for oral thrush that i got after taking antibiotics for the chest infection.

    its never easy for us fibro sufferers is it.but i continue to stay focused on getting well.

    take care all,love fran