The 12th Invest in ME Conference, Part 1
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MEA website survey: Should doctors be allowed to prescribe experimental treatments? (June 2017)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jun 5, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    MEA website survey: Should doctors be allowed to prescribe experimental treatments?

    This month's MEA website survey is asking whether doctors should be allowed to prescribe treaments such as antiviral drugs and immunological treatments - even though they do not have a license for use in ME/CFS and are not recommended in the NICE guideline on ME/CFS

    More background information here:

    http://www.meassociation.org.uk/201...and-speculative-drug-treatments-05-june-2017/

    MEA website poll:

    • Should doctors be allowed to prescribe speculative or experimental forms of treatment - e.g. antiviral drugs - for people with ME/CFS?
      • Yes - definitely (49%, 83 Votes)

      • Yes - in some circumstances (41%, 70 Votes)

      • Not sure (4%, 7 Votes)

      • No opinion (0%, 0 Votes)

      • Probably not (3%, 5 Votes)

      • Definitely not (3%, 5 Votes)


        Total Voters: 170
    You can vote via the home page on the MEA website:

    www.meassociation.org.uk


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  2. Valentijn

    Valentijn Senior Member

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    Antivirals aren't experimental if there's an active infection found.

    Drugs dealing with symptoms and issues experienced by ME patients hardly need additional trials when sufficient research has already proven those drugs to be safe and effective in treating exactly the same issues in other patient groups.

    Do you understand what I'm saying, @charles shepherd ? This "hasn't been trialed in ME" ridiculous bullshit is what results in ME patients getting no symptomatic or other medical treatment of any sort.
     
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  3. Tilney

    Tilney

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    I was talking to a Doctor at liME on Friday and said that if I was given the choice of taking something that had a 50% chance of me walking out the front door & falling over or a 50% chance of me running around I would try it.
    I did also say that if researchers wanted samples from me I would be happy to help.
     
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  4. charles shepherd

    charles shepherd Senior Member

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    There is no need to be rude about this MEA survey of patient opinion…

    Please read the background information on antiviral and immunomodulatory treatments in ME/CFS on the MEA website

    The question relates to what is happening 'in the real world' here in the UK where doctors (NHS and private) are basically not allowed to prescribe speculative and experimental drug treatments aimed at the underlying disease process in ME/CFS

    If a serious and active bacterial or viral infection can be identified in someone with ME/CFS, then antibiotics or antiviral drugs should, of course, be prescribed on the NHS

    I didn't mention vitamin B12 injections as another example - but one doctor has been reprimanded by the General Medical Council for prescribing what are regarded as inappropriate vitamin B12 injections

    This is a perfectly legitimate question to ask the ME/CFS patient population - especially at a tine when NICE are considering whether there should be a formal review of the 2007 NICE guideline on ME/CFS

    CS
     
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  5. charles shepherd

    charles shepherd Senior Member

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    I take the view that there are other situations where a more flexible approach should apply.

    For example, in the case of antiviral drugs such as valganciclovir, where there is some evidence of benefit from clinical trials, and from physicians in America who use this drug on selective cases, I take the view that infectious diseases specialists who are familiar with the use of this type of potentially toxic antiviral medication should be able to do so in carefully selected patients with ME/CFS where there is both clinical and virological/immunological evidence to support a decision to do so.
     
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  6. Valentijn

    Valentijn Senior Member

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    Except your "question" comes with a lengthy answer included - that these treatments, including antivirals, shouldn't be prescribed in ME patients unless there's been trials specifically with ME patients.

    That is bullshit.
     
  7. Alvin2

    Alvin2 If humans were rational...

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    Not sure how it works in the UK but around here (Canada) off label prescriptions are permitted and a doctor would only face sanction if they harm the patient through gross negligence, which makes sense.
    B12 injections are harmless and would not get a doc in trouble here but a high mortality rate drug never tested on ME/CFS, not used off label by anyone else and causing death certainly would. In between is not a huge deal if its known to be used off label. That said most GPs don't want to take the risk and would probably send a patient to a specialist who would know about what drugs have been used off label in the past for that condition, though it creates a bit of a catch 22, how do you know what might work without a precedent. But again if its a low risk drug the doc won't be sanctioned for writing the script, and often many patients with the same condition need to experiment to find the best medicines for them
     
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  8. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Well I voted yes. I think the polling stats reflect the degree to which ME patients are desperate for treatment. Especially since some patients elsewhere have access to antivirals, Ampligen, etc.
     
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  9. charles shepherd

    charles shepherd Senior Member

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    I don't think you have read what I have written about antiviral medical in the background information:

    I take the view that there are other situations where a more flexible approach should apply.

    For example, in the case of antiviral drugs such as valganciclovir, where there is some evidence of benefit from clinical trials, and from physicians in America who use this drug on selective cases, I take the view that infectious diseases specialists who are familiar with the use of this type of potentially toxic antiviral medication should be able to do so in carefully selected patients with ME/CFS where there is both clinical and virological/immunological evidence to support a decision to do so.

    Again, there is no need to be rude to make your point….
     
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  10. Barry53

    Barry53 Senior Member

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    I guess I'm just missing something, but can you point to the text you are referring to please. To me the poll and info seems to be saying there are all sorts of reasons GPs are held back from prescribing experimental treatments, but that in some cases they should, with an appropriate waiver form signed by the patient, be allowed to do so. Can you please clarify why you keep calling this bullshit.
     
  11. charles shepherd

    charles shepherd Senior Member

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    Despite some of the problems with NICE guidelines, doctors here in the UK are still allowed to use a degree of clinical judgement when it comes to using drugs which do not have a product license for a specific disease or symptoms

    And even though my personal view is that there should be more flexibility in relation to ME/CFS, I would not want to see GPs prescribing antiviral medication for people with ME/CFS

    I also fully agree with Drs Fluge and Mella in Norway when they strongly advise against the use of rituximab outside current clinical trials
     
  12. charles shepherd

    charles shepherd Senior Member

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    Yes, vitamin B12 has a pretty good safety record - but that is not the problem

    The potential problem here is that people are sometimes being prescribed vitamin B12 for fatigue and sensory symptoms in ME/CFS (and without ME/CFS) without proper checks being done to make sure that they do not have pernicious anaemia - an autoimmune condition which can cause fatigue + sensory symptoms and lead to serious neurological complications involving the spinal cord if not identified, monitored and properly treated on a life long basis
     
  13. slysaint

    slysaint Senior Member

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    On the flip-side of the question of prescribing 'experimental' drugs:
    GPs/patients in the UK should be able to request (and get) whatever tests they think might be necessary and not fobbed off with the 'these tests are not recognised as applicable to ME'; both before and AFTER official diagnosis.
     
  14. Alvin2

    Alvin2 If humans were rational...

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    I agree, i don't like trying experimental drugs because i have had bad experiences and i don't think throwing experimental treatments at a problem to see what sticks is a sane strategy. That said i have a relative with Parkinsons and have had to try different medications to get things as controlled as good as possible, but most are approved for Parkinsons, so not off label, though some have been but were prescribed by a neurologist who has used them in clinical studies and with the understanding of the mechanism of action involved, so its not Russian roulette.

    I also agree with you here, if a doc does not understand what they are trying to treat then one can do more harm then good, though if its pernicious anemia is not B12 the correct treatment? Do you mean if it is pernicious anemia they should be on B12 for life and not just short term?
     
  15. Tilney

    Tilney

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    My GP says there is nothing that I can be prescribed to help with ME/CFS.

    I do also see an infectious diseases specialist in ME/CFS.
    However I have confidence in my specialists knowledge & understanding in ME/CFS.
    I would be happy to try something if it was available in the UK & the specialist thought it maybe beneficial.

    If I understand it correctly the NHS at the moment will only recommend CBT/GET
     
  16. charles shepherd

    charles shepherd Senior Member

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    Yes, vitamin B12 is the correct form of (continuous) treatment for pernicious anaemia
     
  17. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I should have control over what I do with my body.

    If I want to experiment as n = 1 with substance X to try to treat my ailment Y, then that is my human right.

    AIDS activists got it right by demanding access to potential experimental drugs and prevented millions of deaths that would have occurred if government regulations had of been followed.

    The government has prevented our access to ME research funding commensurate with the severity and prevalence of ME.

    The government has prevented our access to potential ME medications.

    The government is complicit in sustaining the ongoing harm from contraindicated treatment and physician induced trauma.

    The government should stop being the gate keeper to my body and my health.

    So yes, doctors should be allowed to prescribe experimental treatment.

    In fact, the patients' access to experimental treatment should not be dependent on a physician's blessing. Imo.
     
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  18. Snowdrop

    Snowdrop Rebel without a biscuit

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    All this talk about harm in relation to taking a drug that is used off label. ME has no treatments.

    For those of us with ME who feel life passing by I think there is a great deal of harm in not offering the opportunity to try drugs based on whatever best evidence can be obtained for the individual.

    So just to recap: Lots of harm already being done.
     
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  19. Dolphin

    Dolphin Senior Member

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    Pretty much all nonpharmacological approaches are experimental for ME/CFS also. Even with GET and CBT, they haven't really assessed what patients actually do in trials so we don't have good evidence on any particular approaches.

    Yet there seems to be a different standard for therapies for ME/CFS given by physiotherapists, psychologists, etc.

    Also then all sorts of complimentary/alternative therapies are also experimental, but there is no ban on them.

    But I understand if somebody else is paying for the treatment e.g. the NHS a lot of rationing can be justified. Just I don't think it should just apply for drugs.
     
    Last edited: Jun 5, 2017
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  20. Alvin2

    Alvin2 If humans were rational...

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    You do make some good points and i agree as well. Government policy is an attempt to come up with a one size fits all policy and sometimes that just doesn't work. If a patient wants a dangerous drug to test on a disease and its unlikely to work or the risk profile is high then a doc should be able to say no (and in fact their license is on the line) but balancing that against experimental treatments to try and achieve better outcomes for a condition is not an easy thing to accomplish.
    That said it would be nice to try to come up with better policies so both interests are preserved, the ability to try non conventional treatment vs the not exposing the patient to take unnecessary risks.
     
  21. Snowdrop

    Snowdrop Rebel without a biscuit

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    And here in Canada at least there should be a rethinking of how medical tests are covered. There are tests available that might uncover abnormalities that could be useful in providing information in assessing what has gone wrong -- and therefore what treatment might work. These tests are not covered (here I'm talking about OHIP-Ontario health insurance) but I think it applies to all provinces.
     

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