The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Forbes: "Big Study Linking Chronic Fatigue To Virus May Be Fatally Flawed"

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by spinhirne, Jan 9, 2011.

  1. Wonko

    Wonko Senior Member

    The other side.
    RE: Funding only

    I'm in the UK and get no additional benefits apart from my rent paid and IS (equivalent to IB long term rate), I'm not exactly well off, I cant afford various tests, protocols or even suppliments these days.

    Any money I might donate would have to be pulled from something else ie less heating, less food etc. as I have NO money spare.

    The amount of money I could donate is trivial and would only make a difference if practically everyone else was donating as well, as people arent (in general) then I cant afford to lose money I need in a wasted act of altruism.

    If I felt it would make a difference and combined we werent talking about a few thousand pounds but millions to go into agreed research then it would be worth the sacrafice, as things are it isnt, and i'm sure I'm not the only one in this position.

    Sorry but thats the situation from my perspective as a humble (and skint) pwME.
  2. Tia

    Tia Senior Member


    <--- What he said.
  3. Esther12

    Esther12 Senior Member

    We were living like that for a couple of years before getting DLA, and are expecting to be going back to it soon (curse my minor improvements in health!). It really is tight trying to live on that little money while also dealing with serious health problems. Thankfully 2 years of DLA has put us in a better position to return to living off so little money, but we're still not looking foreward to it. All the best with it.
  4. Mark

    Mark Former CEO

    Sofa, UK
    I've only read one full thread to inform me, but it was a long one, featuring all 3 of the people you mention, and I have to say that's not the impression I got at all.

    Regarding the 'anonymous writers' claiming to be Miller and his assistant: I just don't get that argument at all, either on the other forum or here. It seemed quite obvious that adustymiller was indeed Dr Miller himself, and trivial to confirm that point, if in doubt, via email - yet an issue was made out of nothing based on the point that the identity of these usernames was unconfirmed. It seems fairly clear that Andy was indeed who he said he was - Dr Miller didn't contradict that. Making an issue out of all that just came across as paranoia.

    Regarding Ecoclimber writing anonymously and claiming to be funding a study, again I don't understand the problem with that either. As with the issue regarding CAA donations, anyone who's ever worked in charities or fundraising is likely to be accustomed to anonymous donations for legitimate reasons, and charities would struggle to fundraise without them, so again it's an odd thing to be making an issue out of.

    And the suspicion and distrust of Ecoclimber's motivations etc, on no rational basis that I can see, again just comes across as paranoia and drives people away.

    Ad hominems and appeals to authority...well I suppose there were probably one or two examples of that, on both sides, as usual - but what came across most strongly was the rudeness and the tone towards Dr Miller and the other two, rather than ad hominem arguments by them.

    Apparent canvassing for research subjects...I'm not sure what's supposed to be wrong with that either but that happens regularly on the forums and seems quite reasonable to me.

    The poor science and the politics since the Lombardi publication are indeed understandable reasons for mistrust...but what was evident on that thread was a dogmatic distrust - a refusal to attempt to trust; a preconceived assumption that the researchers they are talking to must be some kind of conspirators, even - especially? - when they are claiming to be trying to help - and in the end, a lost opportunity for dialogue and establishing a productive relationship.

    Picking out comments by the researchers 'having a go' at people's spelling and grammar and 'constructing them as fools' would require a bit of effort on that thread, in the context of all the abuse thrown at them...yes the researchers slipped into a couple of traps and made a couple of perhaps slightly unwise remarks along the way, but their lapses were nothing in comparison to the behaviour of those ranged against them.

    I really don't see how you can read those threads and interpret the efforts of Dr Miller and his team to allay people's doubts and fears as 'atrocious behaviour'. There seem to have been some good points raised about their study design, which weren't fully answered, but I really can't see where their behaviour was wanting. I thought it was highly commendable that they tried to build bridges and allay people's fears, and very sad that people weren't open enough to allow that process to take place.
  5. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    I think this thread has now taken an interesting turn, as we are starting to discuss things more concretely.

    I would be very interested to hear what this means in , if you don't mind telling me. Not your personal information, but general numbers.

    This brings me to the idea wheter we already have threads about reducing costs, helping people save money? I mostly read the XMRV section, so i don't know. But this might help a lot of people. Depending on what phone providers, price plans, ISPs, bank accounts etc. you use, you might easily save more every month than what was mentioned here before, as a goal for donations.

    As far as donating, i think it is crucial that "everybody" (i would never expect someone to donate who is not able) would participate. This is what would make the difference, in my opinion. We are not rich (most of us), but we are many.

    I've come to the conclusion (but am always open to change my mind), that in Europe such an effort would probably best be organized through CFS organizations. This would help ensure "everybody" donates, so people don't have that fear like Wonko. But please be aware that nothing is lost, if it goes to a good recipient. So i think people who are able to give should do it and not not do it, because they fear others will not participate. Do what you expect others to do, don't wait for them to go first.
    I would love to see all those orgs cooperating, through EMEA, for example, raising this money and making sure it is put to good use. It would be great if there could be one or more European institutions similar to the WPI created. Mathematically it should be no problem. Of course the "yearly goal" should be adapted for each country, i'm sure there could be an appropriate idex found to do that.

    And don't forget, it is not altruistic, even if altruism is a good thing. Unless you already have a treatment that gives you the life you want, you are doing it for yourself.
    People must realize this. In my opinion it is the only way to the health we want.

    I think the biggest challenge is to reach people. I share Ukxmrv's view that a forum will only reach a small fraction. I guess one would have to use different channels, doctor's offices seem crucial to me, internet, ads in newspapers, maybe tv etc.
  6. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    One more quick post, but then i should go to sleep...

    I understand that concern, but these problems can be solved. For example people could make a pledge that would only become binding, if a certain total amount of pledges is reached. So you don't donate, but you say "I will donate 100 EUR if there are 50'000 pledges to donate 100 EUR in the UK". Or there could be a refund.
  7. Angela Kennedy

    Angela Kennedy

    Essex, UK
    Sorry Mark, I still disagree!

    I was astounded at the level of ad hominem from 'Ecoclimber', 'Dusty Miller' and 'Andy', and what is more, their failure to address reasonable questions about the proposed research became quite obvious, and this is where my alarm bells started ringing.

    I also think the situation with Ecoclimber points to the problems of 'smoke and mirrors' afforded by anonymous identities on these forums, hence my own non-anonymity. It means I get subject to some creepy attacks (my facebook has been used to provide details to others to make me look 'bad' - yes, the fact I love badminton and am friends with Erik Johnson (sorry Erik) are two factoids about me that have actually been used against me!) but at least people know who I am, and that I'm not somebody in disguise or camofluage, which is ALWAYS a risk with anonymised avatars.

    We have got to get away from this "we must be docile and trusting to scientists because they are deigning to 'help' us". There is no indication that Miller is 'helping' us at all, it is possible his research could harm the community, so people have every right to be distrustful, and rigourous, and no they shouldn't be toadying to any scientist (not even Mikovits- no offence Judy). Scientists do things usually to advance their careers, and this community are lab rats. We cannot presume they have the community's best interests at heart, so therefore, the community has no emotional beholdence to them, and no moral compulsion towards deference.

    Another thing we need to remember is that, like me, a social scientist and academic, once someone gets on a forum, one basically becomes equal with the rest of the members. This was interesting in terms of how Miller and Andy behaved in particular, and how they were treated.
  8. biophile

    biophile Places I'd rather be.

    I agree! The ship certainly sailed many years ago regarding the earlier raised issue of "guilt by association" and the patient community's supposed reputation.

    I welcome "The birth of a powerful, organized, articulate, mad-as-hell-and-not-going-to-take-this-anymore brand of advocacy unleashed by the Internet. Patients from all over the world are connecting in patient forums and on blogs, private messaging each other, planning their next moves."

    This has arisen out of necessity because the relevant authorities aren't for whatever reason doing an adequate job and after 20+ years they should not be given the benefit of the doubt.
  9. ukxmrv

    ukxmrv Senior Member

    Eric, in the UK we have a problem in that we need scientists to be willing to design research projects around CFS. It's been a bit of a circular arguments with researchers not able to get funding, so we don't attract new people etc etc.

    We have the ME Research people and Invest in ME (the later in a smaller way). The ME Association has a fund for research. AfME does not fund research but has just started on a project for the body/blood bank.

    Invest in ME (who do the yearly conference) did fund the WPI UK split study in XMRV. Maybe ESME would be a good organisation to get the funding to (just thinking outloud here)?
  10. Wonko

    Wonko Senior Member

    The other side.

    ATM I spend money on
    Lowest tier broadband available and I use this for phone via sipgate, I dont pay for TV or mobile (I have loads of credited free sims that Virgin Mobile were giving away a few years ago)
    Personal food
    Catfood and sundries
    2 Taxi's a fortnight (1 each way) so I can go out to visit a friend
    repaying credit cards (which were used to buy food, xmas stuff and the odd gadget to make life easier eg food processor)
    any money I might donate would have to be cut from one of these budgets

    whilst this could be done it would in the case of the obvious canditate (the cc repayments) end up costing me more than was donated, but it is possible.

    Or I could kill and eat the cat netting me one free meal and a saving of about 300 a year, I could never go out saving me about 600 a year, or i could eat rubbish saving a small fortune but making me more ill. Or a combination of the above.

    it's no good saying donate and others will follow, if that was the case they would have already.

    what I personally need to see in order to make it worth compromising my already dodgy health by cutting my food budget etc. is a proper funding campaign for both biomedical and other nonwhacky/nonpointless research on a worldwide basis, and not just amongst pwME, so far I havent seen any evidence that anyone can even gather the funds (or agree on objectives) for the campaign let alone any actual research.

    40 donated by me coupled with a few thousand other patients in the UK is good for nothing and a complete waste of everyones sacrafice, but 4 donated by several million is just about enough to at least show people are serious if not enough to actually effect decent and rapid research. It would be enough to get the ball rolling and would dwarf AFAIK western governments efforts.

    but until someone can setup the initial campaign we are stuck with the ineffectual (as shown by history, I'm not tryign to be insulting or derisorary) fundraising and research efforts of individual charities.

    I cant afford to waste money giving to ineffectual organisations.

    the solution? I dont know but I suspect we need a billionaire with a personal incentive to fund the initial campaign, or we need a worldwide group which hasnt been infiltrated and doesnt owe any funding or favours to government/big business to coordinate it.

    I dont see any.

    Sorry if anyone thinks thats a selfish/negative or ungrateful attitute, I do appreciate a lot of the work which has been done but on the basis of current showing I cant see what difference it's made to pwME in the UK, the resources thrown at this are insignificant in terms of the problem and the opposition we face and my (and a few thousand others) meagre contributions wouldnt make any difference.

    btw in direct answer to your question if it was worthwhile then I could probably donate 60 a year most years, find another million people who'll do the same and I will (or in terms of a smaller project i would consider donating to a charity to help people pay for tests or drugs required ie helping indivuals rather than just research, in short whilst I'm prepared to donate money if it will (or stands a good chance of IMO) make a difference, but not if IMO it wont.

    thats the problem, convincing both me and a few million others that somethign will make a difference, after that gettign donations shoudl be the easy bit
  11. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    if this virus mutates into an air-borne or other more infectious version, THEN we'll see action
    as it is, we are left to rot and die because we cannot make neough noise to get anything done, unlike other more visible, audible groups.
    Our "leaders" in many relevant areas are moronic, ignorant, arrogant, evil, corrupt scum, as has been proven time and time again:

    MPs jailed for fiddling expenses

    Most political leaders having no damn useful background in science or real life (most are from upper middle class/wealth and have no damn clue about the "spongers" they whinge about while they themselves enjoy tax free booze)
    Example: all current UK Cabinet are millionaries, and hey at least Paddy Ashdown (prior Liberal leader) had served in the front line and been unemployed so had a clue about what being "Human" really is and has compassion and honesty (so he's one of the few I respect, regardless of his politics pro or con).

    Hidden cliques of folk ensuring their wives, cousins etc all fill rolls on various groups, committes etc, so you find an extended web of "those who went to the right school" controlling WAY more than you think they do, and earning multiple pay cheques for all of them.
    See UK "Quangos", or how regarding Wakefield, the judge on one case was the BROTHER of the GlaxoSmithKline CEO and didn't recuse himself

    you know, HIV and Syphilis epidemics were let TB run rampant in the USA, at least amongst the folks the Elites despised and ignored, until it let multi-resistant TB get some of the "Real People" on Wall Street as they passed by the folk in the gutter...

    be it a bioweapon, vaccien contaminant or just plain old Mother Nature, refusing to deal with this disease, and others, will bite us ALL in the ass, sooner, or later.
  12. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    Thanks four your reply. I will try to convince you, but i don't think you can claim everybody has the same attitude. I don't think it will be equally hard to convince everybody. In fact i'd say if we have to "convince" everyone we are more or less lost. But i don't think this will be the case. I am not asking people for a favor. I am trying to find a way to get us back what we have lost. I agree one has to do things in a good way and make a case, but i would expect people to be ready and willing to try to advance things. Because i don't think anyone is enjoying their current health status.

    I don't think anyone should hurt their health, definitely not. This is the last thing one of us needs. So if a person really would not be able to pay for food, heating or other such necessities anymore, that person should not donate.

    What i would like to know, and i've been trying to look it up yesterday, but unsuccesfully, is what the actual numbers for a UK resident are. How much do you get per month if you are unable to work? Please provide those numbers, then we can seriously talk about things.

    I do agree that such a campaing would have to be organized properly. That's why i say i would like to see it done through known and respected CFS organizations.

    We don't have to wait for a billionaire. Please don't take this personally, but with that attitude we are getting nowhere. We have already had enough years with too little progress. Things have to change. They have changed during the last year, but we are not there yet.

    You have to please understand that if everyone had the attitude described in your post, it can't work. This is not only true for this specific enterprise, it is true for anyhting that has ever been achieved in the world. If you wait for the others to make their move until you join and everybody does it this way, nothing will happen. Is this what you want? I can't believe that's the case. So please understand we need some more willingness to do something and some more enthusiasm. And when i see how people have reacted to the WPI's XMRV finding i can see that we have plenty of the necessary energy and enthusiasm. I 100% believe it can be done, the only question is "will we do it?". In my country the say "the money was lying on the street" when someone wants to describe a situation where there was a great business opportunity. If you make the calculation of taking the number of people with ME/CFS and then multiplying that number with a modest sum, you can see that the same can be said for our health. It is there, but we have to pick it up. I can't believe that with the money we are capable of raising, as a community, this can't be pushed across the line.
    It is in our hands, so everybody who wants progress should try to do his part. But, i see that not everybody is in a position to be able to do much, so please provide the numbers, so that we can make a better assessment and don't have to speculate.

    By the way, what is the alternative? I don't see any. We are in this fight, against our will, because we somehow got this illness and now we have to win it. No choice. But we can win.

    Look at the WPI. Those people saw that something is not right, something is missing, and they went and built what they felt was missing. This is the right attitude.
    Would you say they have achieved nothing? Their research has brought some of the best people in the field into ME/CFS, they have made news all around the world and they might have found the causative agent behind ME/CFS. And there was basically only a small number of people behind that project. Some wealthy people, yes, but nevertheless, combined we are able to raise a lot more than what they have invested.
    But they were determined and did it. We shoud be inspired by that and do the same. I would not call that "ineffectual research effort".

    As i've said in one of the posts above, it might be a good idea not to ask people for an actual donation but to ask people to make a written pledge that will only become binding if the goal is met (in numbers of donations). Like that people could be sure they will only have to pay in the case of success.
  13. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    I think we have to aim for a Europe-wide cooperation. The USA has the advantage that it's only 1 country, Europe is more complicated.
    I think the UK is locked in it's bad situation (please don't be offended). This lock would probably have to be broken through findings that take place outside of the UK or are funded from outside of the UK.
    I like ESME too. I don't have a finished plan and what i am talking about here is of course much too big for me alone. This would have to be done in an organized way, through appropriate structures. But i would like to work towards getting there, as one of many.
    If we could give ESME 50 million Euros tomorrow, what could they do? Probably not much. But i think ESME connects many good minds. So i think there we could find the capability to say what has to be built and where funds should best go.
  14. spinhirne


    "Anderson is only reporting the facts and this has nothing to do with ME/CFS. stop using our community to support your false beliefs with wakefield. he is a fraud just like the weasel."

    You misunderstand. I have nothing to do with MMR, autism, or Wakefield. I just used this as a random example of I where I thought a media person, Anderson Cooper, behaved inappropriately. I feel that ME/CFS advocates, as with other medical condition advocates , should learn from others.

    You may want to be a little more gentle. I do not know if Wakefield is a fraud or not. I would ask you how would you feel if Judy Mikovitz was interviewed as Dr. Wakfield was on Anderson Cooper. Then, how would you feel if you went to an autism forum and saw this:

    Anderson is only reporting the facts and this has nothing to do with autism. stop using our community to support your false beliefs with mikovitz. she is a fraud just like the weasel.
  15. spinhirne


    Wow. In general, the participants on this forum are quite thoughtful. I hope I have this right as I am new here and am not entirely certain how the forum works. I think I was the original post on the thread and there is no nesting, correct? 75 comments on 8 pages.

    I published a little intro some place on this forum. I may get a link to it. To repeat, I got involved with health issues by trying to get some attention for Lyme borreliosis and associated infections and after a few years realized that focusing on one disease was not going to fix anything. There are fundamental problems caused by the medical industrial complex. Various disease groups competing with each other was not going to fix anything. Lyme groups fighting with each other was not going to fix anything.

    When I saw the Forbes blog come onto my screen I thought the ME/CFS community should know about it because Forbes did a horrible article a few years ago about Lyme disease. I haven't taken the time to check if it was the same Forbes writer or not. In the Lyme article it was obvious they were quoting blatant propaganda, with their own expansions, that encouraged people not to get properly treated.

    I am sorry if anyone misunderstood my reference to MMR, autism, and Wakefield. I have nothing to do with any of that. I do not know if Wakefield is a fraud or not. My point is that your favorite, most ethical scientist could possibly be treated the same way Wakefield is. The level of misinformation is that great. The sorting of the bad scientists from the good is that poor.

    I commend everyone who responded to the Forbes article by using facts without name-calling. I think that is the best tactic. I know it takes enormous self-control when you have been personally affected.

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