1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Time Change Equals Jet Lag, ME/CFS Style
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
Discuss the article on the Forums.

Is M.E contagious ?

Discussion in 'Other Health News and Research' started by AndrewB, Aug 8, 2011.

  1. AndrewB

    AndrewB Senior Member

    Messages:
    121
    Likes:
    13
    England, UK
    Since i got ill last year its been a hellish ride of getting nowhere fast to get diagnosed.
    Now, ive had all your very basic blood tests, all clear, and so do many other people.
    Ive had clear x-rays and a clear CT scan, again, just like many others.
    Having done so extensive reading on this illness, it would seem quite clear that the cause is viral.
    Now, not only do ME sufferers deserve to know if the cause is a retro-virus, but so do all we come into contact with.
    The thought i could pass this on to my family and loved one's enrages me.
    Given the UK govenments decision not to allow anyone ever diagnosed with ME/CFS (even those in permanent remission) from donating blood,
    if thats not a clear sign that the govenment know this illness is possibly contagious
    via bodily fluids, then i dont know what it.
    So why i ask, are we letting them get away with funding cognative therapy and other useless things in the face of a retro virus.
    Im not even saying it definately IS XMRV, but if we are infectious, its certainly some kind of transmitted viral infection, and the govenment owes it to us all to fund bio-chemical research and stop the spread of this devistating illness :(

    Andrew
  2. Vanguard

    Vanguard

    Messages:
    78
    Likes:
    2
    I agree Andrew. What worries me is how long it has gone on for. It's not like evidence of a viral or retroviral link have just been found, yet we're not seeing any political action taken on it. I believe it's because of money, and because they don't want to admit they were wrong now and face backlash. In the meantime I guess we all have to face it individually and get tested for xmrv and other viral titres, and try to get treatment if we can until something happens. As for political action the only way we're going to make a change is if we all work together and organize a movement of some kind.
  3. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,297
    Likes:
    1,683
    London
    We aren't letting them get away with it. Patients have organised demos, written letters, seen their MP's etc etc. We had a protest at the DWP on the day that the blood ban started. The media totally ignores us (and yes, we do press releases, contact them etc) unless it is a person like SW complaining about patients.

    We are also let down by some of the ME charities as they are sitting on the fence as far as a retrovirus or any infectious agent. More could be done about all the viri implicated in this disease.

    Some ME patients do not believe that this is an infectious disease. I've had hate mail in the years past even to suggest this. We need the research done. Not all ME and CFS are going to have an infectious cause or be potentially infective. My own family has ME in both blood relations and the in-laws.

    It's going to be a question of subsets. The "if" is a huge question that needs to be answered.

    Under the ME and CFS umbrellas there is a mixed group of patients. Only some are going to be infected with XMRV and we don't know if XMRV is causal. We warned them at the time of the term CFS being invented that this would happen. It's been a disaster.

    For the last 20 odd years instead of the basic epidemiology and basis research into the causes of the disease we got the psychiatric research instead. We wrote letters, did petitions, demonstrated, got attacked by the UK media - no one listened to ME patients.

    Now the MRC has announced a paltry 1.5 million but they should be spending the same amount as a HIV/AIDS.

    XMRV+
  4. AndrewB

    AndrewB Senior Member

    Messages:
    121
    Likes:
    13
    England, UK
    Does anyone know if any public figures who have been diagnosed that have gone public with the illness have been contacted ?
    It would need to be someone that carried the kind of name and fame that the media would HAVE to put this illness in the news,
    and help the pressure group's to really push the MPs to call for more govenment funding.
    This should happen in all countries, and i suppose that would take a lot of work, but im sure it could be achieved.

    Andrew
  5. WestOzGirl

    WestOzGirl

    Messages:
    33
    Likes:
    3
    Western Australia
    Could ME/CFS be a non-viral but a transmissible disease and follow the allograft theory of disease transmission?

    Have any scientists looked into whether ME/CFS could be a non-viral but transmissible disease similar to the way devil facial tumour disease (DFTD) is transmitted? It was first thought DFTD was a virus but after deep sequencing the origin was discovered to be a clonal rogue cell line (schwann cell) from a single female. So depending on the rogue cell type and epigentics, our disease presents itself with varying phenotypes and penetrance.

    http://en.wikipedia.org/wiki/Devil_facial_tumour_disease

    http://www.wired.com/wiredscience/2010/01/tasmanian-devil-cancer-mystery-solved/

    http://www.abc.net.au/news/2012-11-08/new-lead-on-devil-facial-tumour-disease/4360286
    merylg likes this.
  6. beaverfury

    beaverfury beaverfury

    Messages:
    425
    Likes:
    427
    West Australia
    Interesting. But it would take some pretty full on contact to transmit in this way wouldnt it?

    I drank from the coffee cup of a fellow Cfs'er a week before i fell ill. Does that count? Kind of wish i hadnt now, but, just one of many suspicious threads to moi onset.

    Poor little devils, look like getting wiped out:(
  7. WestOzGirl

    WestOzGirl

    Messages:
    33
    Likes:
    3
    Western Australia
    Disease transmission by allograft has been seen in human organ transplantation, sexual contact (canine transmissible venereal tumour - CTVT), sniffing (CTVT), licking (CTVT) as well biting (e.g. DFTD and CTVT).

    It has been reported that the abnormal cells from both diseases, DFTV and CTVT, "steal" mitochondria from healthy cells...Hmm :whistle:

    Mitochondrial Capture by a Transmissible Cancer
    http://www.ncbi.nlm.nih.gov/pubmed?term=Mitochondrial Capture by a Transmissible Cancer
    Cancer pilfers cell powerhouse
    http://www.the-scientist.com/?articles.view/articleNo/29470/title/Cancer-pilfers-cell-powerhouse/

    ME/CFS researchers should be looking at all avenues of transmission by allograft including:
    • Vaccines
    • Blood transfusion
    • Saliva/mucous secretions
  8. Seewell

    Seewell Senior Member

    Messages:
    234
    Likes:
    142
    Hi
    I came across this video on my travels - Dr Chia talking about whether M.E- C/F/S is Contagious or not.
    He says its not ! - Ive often wondered about this (if right).I find it comforting to know that.
    Anyway just thought someone might find it of interest to.
    30/01/13
    Waverunner likes this.
  9. Research 1st

    Research 1st

    Messages:
    65
    Likes:
    103
    Well seewell, this is a highly debatable area and pretty hard to conclude on as there is no robust data.

    No one knows what ME is, because to confirm ME you have to slice deceased people up and analyse their spinal cord under a microscope. (Dr Chia is discussing post infectious or indeed persistent infectious chronic fatigue syndrome and not exclusively, ME).

    First of all you have to decide how you define ME.
    Then you have to decide on the evidence for your question:

    Without a definition that is appropriate or accurate, then the evidence is muddled and confused.
    The evidence suggests not, but there are some strange anomalies worth looking at.

    1. ME seems to develop in families and there can be multiple family members coming down with ME at the same time. This could be down to genetic factors involving common viruses. However, this could also be due to a retrovirus infecting DNA and the DNA virus being passed on in families, so there is your 'genetic factor'.

    2. ME does appear to come in viral outbreaks so a contagious virus seems possible. However, define ME? Again this is counteracted by the fact by the time people are diagnosed (6 month waiting period) a virus would either have gone (hit 'n' run scenario) or possibly migrated to tissue where it is unlikely to show up in the blood. Which doesn't mean ME patients aren't infected or infectious, it just means the bug is trapped in tissue and cannot be seen in a blood work up. So no evidence of outbreaks using standard tests.

    3. ME might not require a contagious element, and the agent that causes ME could be a latent or congenital matter. ME could appear to be an acquired infection with a contagious virus we caught one day and never recovered from. However, the virus could simply be a relatively innocuous EBV (glandular fever) that is not unique to ME sufferers at all that was going around your town one day that only because of the ME element that is unknown, causes a devastating immunological reaction (sudden onset) or more of a slow burning decline into ME (slow onset).

    I'd say we don't know and cannot know until we define what ME is and we have more research especially using tissue biopsies such as Dr Chias work. This would be unlikely as research is expensive and I cannot imagine any health systems permitting tissue biopsies in people they are told largely recover with psychological therapies, even if this claim is unproven. Unfortunately medical media spin is very effective.

    To change the situation we'd have to redefine CFS with multiple subsets or separate ME politically from CFS (CDC criteria) and wait for decades from autopsy studies in people with ME which are very rare indeed.

    Until then we could have a look at:

    Viral onset CFS
    Non viral onset CFS

    Yet thIs isn't required for a diagnosis for CFS or ME. Meaning we aren't really getting anywhere fast.
    Unless all patients are offered a stomach biopsy and we start replicating Dr Chias findings over and over again.
    Then we do get somewhere.

    Would this be likely though in the ever oppressive political climate of woefully inadequate levels of biomedical CFS research funding?
    beaverfury and SilverbladeTE like this.
  10. Seewell

    Seewell Senior Member

    Messages:
    234
    Likes:
    142
    Hi 1st
    Im sorry i cant write a long reply - But i hear what you are saying - Just one mans opinion.
    Put i thought he put it well,and it made sense to me.

    I am going to be trying a antiviral herb called Oxymatrine soon.
    sw
    SickOfSickness likes this.
  11. Seewell

    Seewell Senior Member

    Messages:
    234
    Likes:
    142
    P.S - did you watch the clip ? - He did say in the inital stages it can be contagious.
    I am definitley not here to ra ra Dr Chia - But to learn more about this.

    There must be many people with m.e that have partners,that werent with them at the onset of this illness
    who can say whether the above is rubbish or not.
    %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
    I worry about giving this illnes to people i love.
  12. alex3619

    alex3619 Senior Member

    Messages:
    6,797
    Likes:
    10,297
    Logan, Queensland, Australia
    I think Chia is right, its not contagious. However the triggering pathogens can be contagious during active infection. Also it does appear something is transmissable via blood, based both on the 1955 animal studies and on observations about blood transfusions in new patients.

    Now just because its not contagious normally (and this applies to both herpes and enteroviruses, but perhaps not other pathogens) doesn't mean a patient cannot become infectious during viral reactivation. So there may be a window of potential transmission from close contact during this time. Generally however the very low rate of apparent transmission from patients, while mostly anecodotal, suggests there is not much risk.

    However the pathogens so far implicated in ME are out there in the general population. A number of people have them at any one time in the population. Its always a risk for infection.

    My suspicion with enteroviruses is that one of the latent lifecycles that can reactivate with a new enterovirus infection might induce a shift in viral strains. I have yet to develop this concept or done enough investigation, but in the event of such a viral infection reactivating a latent infection the number of strains that might be transmissable might increase.

    They have been looking to prove patient to patient transmission for a long time but have not done so. Blood transmission is likely, and transmission during the very early state of infection is likely, but the only time it would be transmissable after that would be during viral reactivation. Nobody has studied this transmissability during viral reactivation so far as I know, so its totally an open question.

    Against this lots of people are infected with these pathogens, almost everyone in the population at some point, but most of them do not get ME.
    SickOfSickness and Seewell like this.
  13. Waverunner

    Waverunner Senior Member

    Messages:
    989
    Likes:
    810
    Pleconaril could be a treatment option for enteroviral infection. However, it was not approved by the FDA and currently it isn't sold anywhere in the world. I could throw up, when I read their arguments. The FDA said, that the cold "typically resolves" on its own and therefore they raise the safety bar for Pleconaril. Moreover there is no "urgent" need for it. This is true for 99% of the population but what if it doesn't resolve in some people? Who gives government the right, to block a drug, that could help people, who take the risk themselves? This system is so sick...

    First, the abstract from Dr. Chia.

    http://www.enterovirusfoundation.org/treatmentphardrugs.shtml

    Pleconaril is a drug that interferes with enterovirus attachment and uncoating by binding to the virus protein capsid. It was once the most promising candidate for the treatment of enteroviral infections because of its oral bioavailability, penetration into the central nervous system, and efficacy in reducing the duration of symptoms and morbidity in neonatal sepsis and adult meningitis. It was used on a compassionate basis until 2003, when the US Food and Drug Administration (FDA) declined its license. Pleconaril is being investigated for intranasal treatment of rhinovirus infections and is now licensed by Schering Plough. Other drugs with similar actions are being developed by other drug companies.

    And here is what the FDA said in 2002:

    http://www.lancet.com/journals/laninf/article/PIIS1473-3099(02)00326-2/fulltext

    An advisory committee of the US Food and Drug Administration (FDA) clearly had these issues in mind when, in April, it voted against approving pleconaril for treatment in adults of acute upper-respiratory illness caused by picornaviruses (ie, colds). The committee stated that it wanted to “raise the bar” for pleconaril because the common cold typically resolves spontaneously, and there was no “urgent need” for the drug to be approved without first answering safety issues. The committee was particularly concerned that pleconaril may cause menstrual disorders.
  14. Shoesies

    Shoesies Senior Member

    I am sick to death of these so called "experts" blocking viable treatment options for the chronically ill.
  15. Research 1st

    Research 1st

    Messages:
    65
    Likes:
    103
    Yes I did watch the clip. I thought it was a very good interview and Dr Chia sounds like an excellent doctor who is able to produce some interesting results that cannot be discounted easily.

    I agree with Dr Chia personally, however he will need to propose a replacement name for CFS & CFS/ME patients with an active infection because by definition, they don't have CFS according to the CDC's diagnostic criteria and they also don't have ME unless Dr Chia can show they all have testable abnormal neurological signs that are consistent with a likely encephalomyeltiis. Maybe he can call it chronic enteroviral CFS?

    Seewell, when you say you worry about passing your illness on do you mean in everyday social contact or sexual contact? I would imagine the risk is probably zero from everyday social contact unless you are heavily viral (like Alex said talking about viral reactivation) and negligible from sexual contact. But, we don't know for certain, no one does.
    Seewell likes this.
  16. Seewell

    Seewell Senior Member

    Messages:
    234
    Likes:
    142
    I meant close family members im in contact with every day - not sexual contact.


    A number of years ago i took Powdered organic "Olive leaf extract" (antiviral) in high numbers.
    I worked up to 19 capsules a day in the end. - But it had no great effect
  17. Research 1st

    Research 1st

    Messages:
    65
    Likes:
    103
    Hi Seewell. Well I think Alex and Dr Chia are correct and that it is unlikely you're contagious after the initial infection so I doubt you could pass on your illness to other family members, especially if an enterovirus is embedded in your stomach tissue rather than your respiratory tract where you could potentially cough and sneeze a pathogen onto others around you.

    I don't know if any studies have been done on long term people with ME CFS and if other people in sufferers families who are sick became sick rapidly, or years later. I doubt that research has been undertaken. It would be interesting to see what the results are. E.g. if there were some unexpected rates of diagnosis of ME CFS (or a CFS like illness) appearing in family members years after the person with ME CFS was first diagnosed. Does that happen? I imagine we only have anecdotal reports at best.
  18. Waverunner

    Waverunner Senior Member

    Messages:
    989
    Likes:
    810
    There seems to be another treatment option:

    http://www.biotapharma.com/?page=1021001&subpage=1021018

    Unfortunately, phase III hasn't started yet and Biota said nothing about a time frame.

    "In addition, Biota needs to satisfy regulators that it will fill an unmet need in healthcare before it is available to the public." This is just insane...
  19. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    I've looked around the site but am not finding discussion on this, if it has been raised elsewhere please
    point me in the right direction.

    Any evidence from our group and their families that this condition can be transmitted to children or spouse? I wasn't aware of the possibility until I read on this site in the past week about epidemics of CFS.

    Now I'm scared to even hug my kids much less get close to my partner...thanks for any thoughts on this.
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,386
    Likes:
    5,113
    Albuquerque
    I've merged your thread with another one Sparrowhawk.

    Sushi

See more popular forum discussions.

Share This Page