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!
ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
Discuss the article on the Forums.

NHS wont pay for tests on herpes virus and associated viruses.

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by snowathlete, Dec 5, 2011.

  1. snowathlete

    snowathlete

    Messages:
    1,997
    Likes:
    1,974
    UK
    It's what I expected, but it still makes me cross.
    Basically, they are saying i have a diagnosis, and until there is some solid proof that these viruses are involved, they wont test for them as they expect them to be normal. Therefore I should live with my illness, and do nothing.
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    838
    UK
    Sorry to hear and thanks for the information snowathlete. I've often wondered just how limited the basic blood test done here might be. (No results on my own - as usual it seems).
  3. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,264
    Likes:
    1,631
    London
    Sounds like they are sticking to the NICE guidelines. Sadly even patients who do present them with the relevant tests are also denied treatment (that's what happened to me anyway).

    Was it your GP? There are a couple of NHS consultants who will offer some limited testing but access to treatment remains a huge problem for us in the UK.
  4. boomer

    boomer Senior Member

    Messages:
    143
    Likes:
    6
    If these viruses are tested and treated for people with autism and parkinson's then the same should be offered to people with cfs/me. If there is a difference, then it is clear they are discriminating against people with cfs/me.
  5. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,264
    Likes:
    1,631
    London
    Boomer in the UK people with Autism and Parkinson's are not routinely tested for herpes viri or treated on the NHS for these.

    The only way that this happens is if a patient joined a research program or has signs of an active infection and convinces their GP or consultant to test or has the luck of drawing an appointment with a GP consultant who has an open mind or an interest in these viri.

    Some very lucky ME and CFS patients are getting tested or paying for tests and are then getting some limited tx but this remains rare.

    The NICE guidelines determine how CFS/ME patients are treated on the NHS and that is why we took them to court and had a judicial review. We lost the case.
  6. Tony Mach

    Tony Mach Show me the evidence.

    Messages:
    146
    Likes:
    34
    Upper Palatinate, Bavaria
    I understand your frustration, but I have been down that path and getting an test doesn't tell you that much. It improves what you know (I know I have HHV-6, probably active EBV and probably active VZV), but it doesn't pave the way to treatment.

    Firstly, the connection from ME/CFS to Herpes-Viruses is weak (and everybody in the population has one or another Herpes-Viruses).

    Secondly, testing is complicated. There are 8 known Herpes-Viruses, so you probably need to test for all. For every Herpes-Virus there are different "sub-tests" one can do to determine whether a certain virus is present or not, and if present if it is dormant or active. Not every lab offers every test. Different doctors interpret the result differently. So after a test, you could be none the wiser...

    Thirdly, there are anti-virals for Herpes, but results are not that good. Professor Montoya from Stanford had some success in a small study with patients who had high "titers" (a measure of the test), but in a bigger study it didn't pan out that good. I would guess less then 10% of ME/CFS patients are helped by Anti-Herpes anti-virals, the anti-virals aren't cheap and the side-effects can be not so nice (e.g. kidney problems). So finding a doctor that will prescribe anti-virals is the problem. From my experience simply waiving a test under the nose of the doctor isn't enough to convince him/her and he/she would be right not to prescribe a drug he/she is uncomfortable with! The evidence just isn't that good.

    And fourthly as hinted above, even if you test highly positive with the current tests, and even if you find a doctor that prescribes currently available anti-virals and you try them for a year, you have a very high chance that it would not help you.

    If you got specific Herpes problems (as in Shingles) in addition to ME/CFS, than I would suggest you try to press on based on that. If you "only" (sorry, don't know how to better word it) have ME/CFS, than I would not get too hung up on that at that moment.

    There is some research going on with regards to Herpes viruses and ME/CFS if there are any developments you will hear them here I guess. At moment you are certainly not missing out on a magic bullet by not being tested and it won't help you with your doctor if he isn't convinced.

    The problem is not that patients are denied the test, the problem is that there is not enough research being done.
  7. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,264
    Likes:
    1,631
    London
    I hope that Tony Mach isn't refering to my post when he says "fourthy as hinted above.."

    Sorry if I wasn't clear.

    One of the most useful drugs I have had in the nearly 30 years of ME is Valtrex. Really glad that I tried it. This is without the "help" of the NHS of course.
    Shell and taniaaust1 like this.
  8. Tristen

    Tristen Senior Member

    Messages:
    611
    Likes:
    418
    Northern Ca. USA
    Don't know the UK system on this, but it sounds crazy. I would get a different doc. There are certain basic tests that need to be done. This is especially true if you have someone willing to treat any of the opportunistic viruses, including the Herpes family.

    It's just not true that it does no good to treat these viruses. There are docs here in the US having some success with AV's. Dr Peterson has had significant success treating a subgroup with Vistide. AV's don't work for all the people, all the time, but oftentimes they do, and it would be a crime to miss something that is treatable.
  9. snowathlete

    snowathlete

    Messages:
    1,997
    Likes:
    1,974
    UK
    I agree that not enough research is being done, but there seems to be enough evidence that treating viruses like herpes (though not just herpes) is helpful in some ME patients. It may not be a cure, for most at least, but plenty of people have treatment on these viruses and have some improvement.

    The problem is that the NHS doesnt value a small portion of patients having some improvement, weighing that up against the cost. I understand this from a big organization but at the same time, ive paid taxes all my life, and in fact am still a net tax payer even now, so i think it stinks that i cant get some help, even if it would only have say a 10% chance of working. To me, my quality of life is so low, and my options, so limited, that a 10% chance is, to me, fantasticly worthwhile.

    This is the problem with the NHS; anyone with a long term illness without a widely accepted treatment, is marginalized by the system and has to just lump it.
    So instead of getting help from the government, i have to now sell my car to give myself a chance at something that might improve my quality of life.
    Shell, ggingues and vli like this.
  10. vli

    vli

    Messages:
    1,613
    Likes:
    1,637
    CA
    snowathlete, I don't know where you are with your treatment options right now, but I just want to say how much I relate to your experiences with the NHS. What you said was exactly what I encountered when I tried to get ANYTHING under the NHS during the years of 2001-2007. Bloody "£$&%$*ing useless.
    justy and Shell like this.
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,882
    Likes:
    755
    Concord, NH
    Perhaps you should leave the country, for greener pastures?

    GG
  12. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    838
    UK
    It does seem to me awfully short-sighted not to broaden viral testing in the NHS. At sudden vertigo onset 12 years ago I knew viral but even antibiotics denied. In the meantime as health declined and neurological etc symptoms increased I must have cost the NHS fair sums already ((MRI scans showing "high spots" in the brain with no explanation, CT scans, muscle function tests - awfully painful, barium enema test etc with no conclusions). Then the drugs associated with conditions that developed - osteoporosis, osteoarthritis, hypothyroid, pain - gabapentin. Even my Neurologist mentioned "reactive" - ME poss and thought viral. Should add two street collapses (passings out) taken to an already busy A & E who were none the wiser anyway.

    I did notice at the last blood test for thyroid function the normal "virology" box only carried below 2 specific viruses - EBV & CMV.
  13. snowathlete

    snowathlete

    Messages:
    1,997
    Likes:
    1,974
    UK
    I've given up on the NHS for ME. Haven't been to my GP since this. Zero value.
    vli likes this.
  14. justy

    justy Senior Member

    Messages:
    2,339
    Likes:
    1,955
    U.K
    couldnt agree more Snowathlete - i am currently trying to raise the approx 2.5thousand pounds needed to travel to Belgium to see KDM. Currently having got anyhting saved as my family keep having emergencies. I was hoping to go in the spring, but can see now it might take longer to get the money together. We have a low family income and i am trying to save from my DLA.

    All the best, Justy.
  15. Sasha

    Sasha Fine, thank you

    Messages:
    7,435
    Likes:
    5,300
    UK
    Hi justy - have PM'ed you. :)
  16. maryb

    maryb iherb code TAK122

    Messages:
    2,704
    Likes:
    1,680
    UK
    Enid interesting to note that you had vertigo onset. Mine started with an inner ear infection, but since then I have relapsed several times with bad vertigo - to the point where I can't get out of bed even to use the loo - I was hospitalised 3 times, downgraded to a possible migraine WTH after they initially thought it was a brain bleed - the last 3 times it occurred I hotfooted it down to B/spear as soon s I could be bundled into the back of the car to be tested for EBV and CMV - first time my active CMV titres was off the scale and subsequently it was EBV.
    Of course I'm still ill but at least I know these 2 viruses cause this vertigo when they activate.
    Why can't they test for these on the NHS??????
    BTW - I also get horrendous night sweats (more like drenching episodes) nearly every night.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,935
    Likes:
    4,048
    australia (brisbane)
    They dont want to test for these things because treating them with antivirals costs too much but this is short sightedness that economically hurts the governement because now the cfs/me sufferer cant work, pay taxes etc If they did test properly and then treated appropriately then alot less would be relying on government assistence etc
    Its just plan stupid what theyare doing.

    cheers!!!
    vli and ukxmrv like this.

See more popular forum discussions.

Share This Page