New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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My email to MIller of Action for ME

Discussion in 'General ME/CFS Discussion' started by JohntheJack, May 11, 2015.

  1. JohntheJack

    JohntheJack Senior Member

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    Miller, medical adviser to AfME, made a speech at Gresham's College, available here http://www.gresham.ac.uk/lectures-a...-fatigue-syndrome-not-just-tired-all-the-time

    I have sent him a response if anyone is interested. I'll post his reply when I receive one.

    My email:

    Dr Miller,

    I read with interest your speech to Gresham's which I downloaded with the accompanying powerpoint presentation from here http://www.gresham.ac.uk/lectures-a...-fatigue-syndrome-not-just-tired-all-the-time . I would question a number of points you raised. I am hoping you could clarify a few things.

    First, you say that after the First World War 'the condition was often referred to as neurasthenia or effort syndrome'. As you know, neurasthenia is listed separately from ME by the WHO. It is considered a psychological illness whereas ME is listed as a neurological illness.

    Could you say, please, why you consider neurasthenia is (or was) the same 'condition' as ME? What evidence do you have that there is any link between neurasthenia after WW1 and ME today? Do you accept the WHO definitions? Why, when talking about ME as a representative of a charity which claims to speak for patients with ME, would you link the illness to neurasthenia?

    Second, you say 'there are no characteristic abnormalities on physical examination... and no characteristic laboratory abnormalities'. While this statement is true so far as it goes, it is also true that many studies have found measurable physical changes in patients with ME.

    Could you say, please, why you didn't feel it was necessary to draw attention to these studies? Wouldn't most patients with ME, whom you claim to be representing, want such studies to be mentioned?

    Third, you claim 'there is some evidence' for the effect of cognitive behaviour therapy (CBT). The recent PACE trial, described by the principal investigators as 'definitive', found no evidence CBT makes any objective difference to patients with ME.

    Could you explain, please, what evidence shows CBT is an effective therapy? Are you saying that PACE is wrong? What evidence would you have to support such a statement?

    Fourth, you also claim there is some evidence for the effect of graded exercise therapy (GET). PACE showed there is no evidence to support the model which had been used to justify GET for 25 years, 'physiological deconditioning'. In measurements of physical fitness, the GET group declined and performed worse than all other patients. GET is now considered a 'behavioural graded exposure therapy'.

    While it is true that the GET group in PACE showed improvement in the 6-minute walk somewhat greater than in the control groups, there have been criticisms made of the study. First, the level achieved at the end of the trial was still substantially below that of a normally active adult.

    Second, as you acknowledge, ME patients suffer post-exertional malaise, what you call 'pay-back', and so their performances drop off markedly on the second day. There was no attempt in PACE to control for this possible decline.

    Third, patients in the GET group were 'taught to the test'. Some improvement was likely within the limits of the illness. The larger part of the improvement, such as it was, came in the first weeks: patients may only have been being helped to find the ceiling imposed by their illness.

    Fourth, patients report only a limited amount of energy in the day. There was no attempt to see if patients were walking a little further but doing less generally.

    Could you say, please, why, given these issues with PACE, it is safe to say GET is 'therapeutic'? Should these questions simply be ignored? Or do you have answers to them?

    Fifth, you compare the use of CBT in ME with its employment in other chronic conditions such as cancer and rheumatoid arthritis.

    Are you saying that CBT is used to treat cancer and rheumatoid arthritis? Could you say, please, where you have come across such claims? If you are not saying CBT is used to treat cancer and rheumatoid arthritis, or anyone claims it does and could as some do with ME, then are you not making a false and misleading comparison? If you don't accept the comparison is false, could you explain why it is not?

    Sixth, you say CBT is 'unlikely to cause any harm'. Anything which has the power to do good, as proponents claim for CBT, has the power to do harm. Where therapists and patients embark on a course of therapy, having been told it is effective, but fail, then harm is done to both therapist and patient. Offering false hope is a harm. Patients with ME have severely limited resources: to use up those resources on an ineffective therapy is a harm. Wasting money on ineffective therapy is a harm. Mental health is seriously under-resourced; to take therapists away from areas where their work may have some effect is a harm. To claim that a psychotherapy is successful when it is not, distorts public policy and popular perception of the illness and is a harm; in the eyes of patients with ME, a considerable harm.

    Could you say, please, why you think these harms can be ignored?

    Seventh, on frame 25 of the powerpoint display, you describe the two views of ME as 'extreme'. Would you consider the same views of cancer or arthritis or PTSD as extreme? Do you consider these illnesses in themselves have elements of both the physiological and psychological? If not, could you say why you believe ME should be considered different from other illnesses?

    Eighth, on frame 26, you say that the debate over the psychological and physiological nature of ME is 'sterile' and seem to suggest that those who raise the question are separating mind and body. Again, I would ask if you apply the same reasoning to anyone who says cancer in itself is physiological or PTSD is psychological? Do you recognize a distinction between, for example, PTSD and cancer? If so, could you explain, please, why the same distinction should not be applied to ME? If not, could you confirm that you would support a dominant role for psychiatrists and psychologists in deciding priorities and clinical guidance for cancer treatment and research? That the chief adviser to the government for cancer should be someone who considers the illness to be psychological?

    Popular perception of the illness and public policy are shaped by its nature. If ME is psychological, then spending money on a possible biological cause is wasted. If ME is biological then PACE was a scandalous waste of money. Are you saying that this does not matter?

    Between 1990 and 2011, the MRC spent nothing on biological research of ME. £5million was spent on PACE (£3million from the MRC). Would you support the whole of MRC research money for cancer being spent on trials of psychotherapy? If not, could you say why not and why ME should be treated differently?

    Hundreds of studies have shown measurable changes in patients with ME. Could you say what evidence there is which suggests ME is psychological?

    Ninth, on frame 27, you say 'stress, toxin, life events' 'precipitate' ME. The Oxford criteria recognize post-infectious fatigue, ie ME, as a distinct subset of CFS. Could you explain, please, why you reject this distinction and what evidence you have that ME is 'precipitated' by stress? Toxin? Life events?

    Tenth, on frame 27, you claim that 'illness beliefs, law suits, searching for a cause, extremes of activity' 'perpetuate' ME. Could you explain, please, what you mean by 'law suits'? Again could you give evidence for the role in 'perpetuating' ME of 'illness beliefs'? Law suits? 'Searching for a cause'? 'Extremes of activity'?

    Eleventh, on frame 30, you link 'CFS' to 'other MUS'. Could you say, please, what evidence leads you to link ME with IBS? Tension headaches? Fibromyalgia? Chronic pain syndromes?

    Twelfth, throughout the presentation you use the term 'CFS' (eg frames 25, 33 and 46). On frame 9 you seem to suggest that ME is synonymous with neurasthenia, Effort syndrome and CFS. WHO recognize ME as a distinct illness, which is also current UK government policy. Do you accept this recognition? Could you say why you use the terms synonymously? Do you recognize ME as a discrete viral, neurological illness?

    Finally, you are described as the medical adviser to 'Action for ME' and the powerpoint presentation carries the 'Action for ME' logo, is what you say in both the lecture and the presentation official policy of the charity? Does 'Action for ME' recognize ME as a discrete viral, neurological illness?

    You seem to be referring throughout to 'CFS'. Is that the policy of 'Action for ME'? If so, would it be more appropriate to rename the charity 'Action for CFS'? Wouldn't that be a more accurate reflection of the charity's approach and aims?

    I understand you may be busy and these are a lot of questions, but I'm sure you agree it is important that 'Action for ME' has a clear, evidence-based position.

    Since the speech has been made available online, you were there as a representative of a charity which claims to speak for patients with ME, and several patients have expressed an interest, I shall paste this email online and publicize a link. I shall do the same for your response. I trust that is acceptable.

    I look forward to hearing from you,


    John Peters.
     
  2. Esther12

    Esther12 Senior Member

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    Thanks, although tbh, a little on the long side for me!

    It never occurs to me to write to people like this. Will be interesting to see if/how he replies.
     
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  3. JohntheJack

    JohntheJack Senior Member

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    Yes, I'm afraid I think I need an editor. It's a characteristic failing of mine to go on too long.

    I agree: it will be.
     
  4. Esther12

    Esther12 Senior Member

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    Difficult to avoid when there's so much frustrating stuff around.
     
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  5. rosamary

    rosamary Senior Member

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    I admire you for writing. Yes, there are a lot of points in it, but at least you've made those points. Why not? Whatever you send, short or long, will be water off a duck's back.
     
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  6. ukxmrv

    ukxmrv Senior Member

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    Maybe send as copy of your letter to AFME as well?
    It's a really good letter and you covered all the points very well.
     
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  7. JohntheJack

    JohntheJack Senior Member

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    Yes, he did seem to make a number of false assertions, I thought.
     
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  8. JohntheJack

    JohntheJack Senior Member

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    Thanks. Yes, I fear I may well be ignored
     
  9. JohntheJack

    JohntheJack Senior Member

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    Thanks. I cc'd Sonya Chowdury. I didn't have a direct email address for Miller, so I sent to policy@, subject line FAO Dr Miller.
     
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  10. Dr Speedy

    Dr Speedy

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    Well done but as u know this so-called charity is run by denial psychiatrist Peter White which says it all
     
  11. Dr Speedy

    Dr Speedy

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  12. JohntheJack

    JohntheJack Senior Member

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    Thanks. I should have thought of that. In fact he is no longer at that address. I got an automatic response:

    Sorry. I left the Trust on Friday 30 May 2014 and I shall not be able to respond to this email. If your email relates to Trust business or patients I suggest you contact my previous secretary on the telephone below to discuss who best to contact.

    If your message is personal or about medicolegal, BHIVA, BACME or JRCPTB matters, please resend to alastairmiller@me.com or alastair.miller@jrcptb.org.uk


    So I have sent it to his @me.com address.
     
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  13. Esther12

    Esther12 Senior Member

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    I wonder what medicolegal stuff he does.
     
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  14. Dr Speedy

    Dr Speedy

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    "The JRCPTB sets and maintains the standards for high quality UK medical training on behalf of the three Royal Colleges of Physicians"

    http://www.jrcptb.org.uk/
     
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  15. JohntheJack

    JohntheJack Senior Member

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    I sent the email to Alastair Miller and copied to @policy and Sonya Chowdhury at AfME. Neither Alastair nor @policy replied. I did get a message off Sonya, urging me to view the video of the presentation, rather than base my judgment on the Powerpoint. She also said that Miller would not reply.

    I then sent the following email to the Chairman of the trustees, Alan Cook.

    I recognize the good work of 'Action for ME' in supporting patients and raising money for research. I am concerned, though, at the way in which the charity is presenting the illness and shaping popular opinion. In particular, recent public performances by Alastair Miller and Sonya Chowdhury seem to reflect neither the scientific evidence nor the experience of patients.I am sure you will agree that an organization which claims to represent sufferers of this awful illness should do nothing which may create a false perception.I would be grateful if you would answer a few questions on the official position of 'Action for ME'.1. ME is recognized as a neurological illness by the WHO, a designation which is accepted by the UK government. 'Chronic Fatigue Syndrome' is a much more loosely defined term used to cover much broader criteria. Can you confirm that 'Action for ME' recognizes ME as a discrete neurological illness?2. Or does 'Action for ME' consider 'ME' and 'CFS' to be synonymous?3. If you do recognize ME as a discrete neurological illness, could you explain, please, why people speaking on behalf of your charity, claiming to represent patients, use the terms 'ME' and 'CFS' interchangeably?4. Neurasthenia is listed by the WHO as a psychological illness. There is no evidence that there is any link between neurasthenia and ME. Does 'Action for ME' reject the false narrative perpetuated by some that ME is a modern day version of neurasthenia?5. Does 'Action for ME' accept there is no evidence for any psychological aetiology of ME?6. If so, does 'Action for ME' agree that the chief adviser to the government on ME should not be someone who made clear almost 30 years ago that he considers ME to be psychological in nature?7. Does 'Action for ME' accept the evidence of the PACE trial that CBT makes no objective difference to ME patients' lives?8. If so, would 'Action for ME' agree that the NICE guidelines describing CBT as 'treatment' for ME are unsafe?9. Does 'Action for ME' accept that hundreds of studies have shown real, measurable changes in the bodies of patients with ME?10. Does 'Action for ME' accept that ME has an ongoing biological cause?Thank you for your time. I look forward to hearing from you,


    Alan replied promptly (the exchange has taken so long because I have needed time to write my responses, for the obvious reason) and warmly. He explained how he became involved in the charity and his own reasons for doing so. He wants to make a difference to the lives of people with ME. He said that he wanted to use his experience in both the private and public sector to professionalize the charity and his contacts to raise money. He has become aware of the disagreements and tensions but hopes we can all work together.


    I then replied as follows:

    Thanks again for your reply. I appreciate I am just one person with ME and you are taking the time to answer my emails at some length.I do recognize and thank you for your work. It is clear the charity is professional and well-managed. The fund-raising is a real benefit.I'm not sure I entirely accept the argument that researchers were put off from working on ME. I think there is an element of truth in it. I know a couple of people were subjected to nasty and completely indefensible personal attacks. On the other hand, I understand that these attacks may not have actually come from people with ME (according that is to one of those 'attacked', Simon Wessely). And much of the 'harassment' was completely legitimate FOI requests and questions in Parliament. I have never seen any evidence produced that potential researchers into ME as a biological illness were deterred from working. I also think that research was curtailed because the illness was declared 'solved' as psychological and 'treatable' with CBT-GET.In any case, there is a difference between a hostile environment and necessary critical analysis. No one's work should be exempt from proper rigorous assessment, which is what I believe AfME has failed to do with PACE.I can't agree that all research is of value. Nor that there is just a difference of opinion.There is a central dispute over the nature of ME and I don't believe it's possible to pretend it does not exist or can be ignored. Simply glossing over the dispute is in fact to take one side. It feels that we are told we should all accept our differences and learn to celebrate them, so long as just one view prevails.From what I understand, the debate about ME degenerated rather badly at one point and the solution was to stop the endless discussions and to 'be reasonable'. It seems to me that there was a classic pendulum effect: debate was closed down too far and the 'reasonableness' went to the point of an unquestioning acceptance of the established position.The impression I and others have is that policy is being made by a small number of people who are not properly accountable for their decisions. The second is that, as a result, the policy is wrong.According to its representatives and the documents AfME endorses, the current position of the charity is that ME is a neurasthenia; that it is linked to introversion and neurosis; and that it can be treated with CBT-GET.Is that what you believe or think may be true? Do you think my illness, the illness of those trustees who have ME, is a neurasthenia? That it is linked to introversion and neurosis? That if we changed the way we thought about our symptoms we could recover?It is a position many in the UK hold and you have every right to your opinion. But if that is your view, then I think you should have the honesty to make that clear to the patients whom you claim to represent, to the ones who pay AfME subscriptions, to the sick people and their families who are saving pennies to give AfME. Because the vast majority would reject all three of those statements as simply untrue.If you don't think those statements are true, then why as head of the organization are you allowing this to happen? I'm sure you're aware of the distress such assertions cause, especially when made by official bodies and even more so by a charity said to represent patients; how relationships with family and friends are distorted by such statements; how tension is created between patients and their doctors.If you reject them as false, then don't you see part of your role at least as challenging those who assert they are true? How can you change people's opinions when the organization you lead continues to claim those views are true? How can you get others to change when AfME continues to endorse the established opinion, is not willing itself to change?I really am not trying to be nasty here or to start an argument. You have power. It's a power we're too sick to try to exert. You can. So why do you allow these statements to be made, for this policy to be followed?And it's not just a few patients who reject these statements. AfME holds a position which is opposed by all the scientists who have made the important breakthroughs of the last year or so, Lipkin, Hornig, Edwards, Montoya etc. AfME rejects criticism of PACE made by psychologists/psychiatrists who have nothing to do with ME but only want to see rigour applied to psychological trials, such as Wilshire and Friedberg. AfME supports a view rejected by reports to the IOM and NIH in the USA.Even the New Scientist writes that ME has been 'misunderstood and neglected for more than 25 years', criticizing the position which AfME has supported for most of that time.In other words, the policy of AfME may support the existing orthodoxy in the UK but is at odds with the vast majority of patients, the scientific and medical consensus in the USA, psychologists and psychiatrists working for rigour in psychological trials, prominent scientists involved in researching the illness and the New Scientist.I'm not writing to you to express my feelings. I'm trying to make a reasonable, reasoned, evidenced case that AfME has been wrong for these last 15 years or so. I'm trying to find someone with AfME who will justify its position and argue the case.Sometimes a consensus arises which is supported by all 'reasonable' people, but which turns out to be wrong. The consensus on ME has been wrong for 25 years. Again, as the New Scientist says, the scientific story is turning 'full circle' back to the position it was in before the 'belief' theory took hold.During these years AfME thought it best to work with the grain, but it was wrong. A quiet, reasonable challenge of the established view was needed. AfME should admit it's been wrong, reject the unevidenced, false 'belief' theory and support patients in changing the established view in the UK, just as patients have succeeded in doing in the USA.I would stress I am looking for a constructive engagement.I thank you again for the time and trouble you are taking,

    And then Alan ended the discussion. He doesn't believe that there is anything more to be gained by continuing the debate. He hopes we can all work together to help people with ME.

    And my final email, to which I did not expect and have not received a reply:

    Thank you for your email, though, as you probably anticipated, I was disappointed by its contents. You say you don't want to continue the debate. Very well, I don't expect a reply to this email.

    I have never questioned anyone's intentions. I have only ever been trying to discuss policy.

    I said my impression was that policy is being decided by a small number of people who are not properly answerable to the patients, that debate is shut down and that we're all asked to ignore our differences to work together but only while one view prevails. Your reply seems to me to support what I said.

    I presume the trustees who are ill with ME and the family members with ME of the other trustees are happy with the current policy and the unwillingness to debate it. I am surprised they are content that AfME describes their illness as a neurasthenia, says that it is linked to introversion and neurosis, and claims that it can be treated with CBT.

    No doubt you would agree that your overriding responsibility is to the thousands of people sick with ME, and that the charity does not belong to the trustees or to the advisers but to the patients. I don't believe that the vast majority of patients if they were aware of AfME's policy would support it, nor consider it in their best interests that all attempts to debate policy are rebuffed.

    I have to say that I feel there is something patronizing about this. Some of us are well educated. We had expectations of careers every bit as good as any of the trustees. We are being patted on the head and told not to worry our little minds. The grown-ups are in charge. Of course, implicit in paternalism is good intention: 'We know what's best for you.'

    You explained how you first became involved with the charity 5 years ago. I understand from that you were not greatly aware of the issues before then. In the last 5 years you have been immersed in the organization's culture. You have understandably developed a rapport with the people, grown to trust them and feel loyalty towards them. I wonder if you had not, whether you would still view AfME policy as right. If you could stand outside all those personal relationships and take a cold, clear-eyed view of the evidence, would you still dismiss the opinions of the vast majority of patients, the scientific and medical consensus in the USA, psychologists and psychiatrists working for rigour in psychological trials, prominent scientists involved in researching the illness and the New Scientist. It will come as no surprise to you that I suspect not.

    Sometimes decent people are wrong. Sometimes people act a little crazily because they're right and no one is listening to them. Sometimes the boat needs to be rocked a little.

    Your work in raising funds is genuinely appreciated. I'm sure you would accept, though, that the really big game-changer would be to get government money involved. From 1990 to 2010, not a single penny was spent on ME as a biological illness by the MRC. While they have finally relented and put up £1million, millions have been spent on CBT, and futile studies into quack cures and psychotherapy continue to drain away resources. The only way to change these priorities is to make people in power aware that ME is a biological illness and cannot be treated by changing patients' beliefs. Yet, AfME continues to support the policies the rest of us are trying to challenge.

    You say we should work together. I agree. I am ill. I can't do much. I tweet. I send out a few emails. I try to engage people in debate. I challenge misconceptions. I'm sure it is of very little benefit, but it's all I can do. AfME then comes along and dumps on everything I've done. I tell people the illness is biological; that there is no evidence the psychological element is any greater than in illnesses such as cancer or encephalitis or HIV; that there is no evidence CBT makes any difference to patients' lives. AfMe says the exact opposite: it tells people it's a neurasthenia, linked to introversion and neurosis, treatable with CBT.

    I would be very happy to work with AfME. I just wish AfME would work with me.
     
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  16. worldbackwards

    worldbackwards A unique snowflake

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    Action for ME was initially set up by good people who were frustrated by the MEA towing the government line. What a shabby, cheap, toadying little organisation it has become.
     
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  17. Countrygirl

    Countrygirl ME is not MUS

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    I was involved with ME Action back in the 80s. Claire Francis joined us for lunch on a couple of occasions and Martin Lev visited us to discuss the way forward. It was a great and courageous group of people that was at the forefront of the campaign. Sadly, it steadily went downhill after Martin died following a relapse and Claire seemed to take back seat. I used to be a contact for them, but I withdrew some years ago after they went to the dogs.
     
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  18. JohntheJack

    JohntheJack Senior Member

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    It seems to have been the other way round now for a while. Alan normally replied very quickly to me, but that last response took a few days. My suspicion is that he checked with Miller and then shut the discussion down. I have a feeling that Alan could be 'turned' our way if it weren't for Miller.
     
  19. Snowdrop

    Snowdrop Rebel without a biscuit

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    It was good of you to write and call them out on what they said. I thought your letter was very well reasoned and written.

    As regards AfME it just seems hopeless. I just write them off as not a real ME charity.
    It's possible that it proves useful to point out the issues with AfME for people who are in the UK and new to ME and trying to find appropriate info.
     
    Last edited: Aug 2, 2015
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  20. JohntheJack

    JohntheJack Senior Member

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    Thanks.
    I agree: I think we should try to make people aware what AfME says about their illness.
     
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