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Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

Discussion in 'Phoenix Rising Articles' started by Firestormm, Dec 6, 2013.

  1. Leopardtail

    Leopardtail Senior Member

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    How long has Sonya been in the post MeSci?
  2. Leopardtail

    Leopardtail Senior Member

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    @MeSci @Esther12
    What do we all want to see in research?

    Selecting candidates for research

    Folks, I would like to hear your thoughts on the issue of selecting who takes part in research (as a subject). My concern with previous research was that because people were not severely enough affected, they probably did not even have ME as a distinct disease.

    I think it's too easy to confuse severity of illness with actually having it. There are people with light fatigue and no other symptoms, they have no place in our research. There are also people with severe fatigue caused by other biochemistry - they also have no place in our research.

    There are people with lighter fatigue who suffer either PEM or Fatigue with Delayed Onset - they are useful research candidates. I don't want to see people without ME determining our treatment, however nor do I want everybody having to develop severe ME before they get treatment. I want to see prompt treatment done correctly to prevent it becoming severe. I would like to see FDO or PEM as mandatory criteria.

    My feeling is that we need to see the International Consensus Criteria used so that research can be compared and so that we have confidence that candidates have note been selected to suit the researcher. Clearly the research may need to have additional criteria (e.g. suffering a particular symptom) but should not contradict those basic criteria.

    I would also like to require that every researcher demonstrate an adequate understanding of PEM, FDO before being permitted to do research. If they don't understand that, they understand our disease. Too many existing researchers fail to understand this, hence experience is no guarantee.

    Finally I think there should be an even distribution of disease progression so that we can start to derive some clarity about cause and effect.

    Disease Progression and Candidate Selection

    My own view is that whatever causes the disease in the first place will be the first biomarker to appear. That as the disease progresses, more and more disturbances will appear just as their are more and more symptoms. I equally expect the treatment will get more complex as the disease progresses and that no single treatment will work in it's own.

    I would like to see an assessment of current severity (at time of sampling) - e.g. using the Bell Scale.
    I would also like to see reporting grouped by those severities.

    If a piece of research is looking at mechanisms, I would like to see a distribution of fatigue levels so that we can see (for example) how thyroid hormone varies as the disease gets worse.
    1. This would allow us to determine why different studies show different results.
    2. It was also give GPs a much better idea what they need to look for in a particular patient
    3. Finally it would allow a proper determination of the underlying mechanism via disease progression.
    If a piece of research is looking at treatment for the disease, I would like to know which of light, medium and severe fatigue benefit from it.

    If the research is looking at the cause of the disease I would like to see the focus on the less severely affected, simply because they are more likely to sow the root cause with less 'knock on effects'.

    What does everybody think?
    Last edited: Feb 23, 2014
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't know. However, she has replied to questions on research in a way that suggests she knows little about it. If one knows little or nothing about a subject one should say so.
    Min likes this.
  4. Min

    Min Senior Member

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    Leapardtail wanted a breakdown of AfME s charitable spending 2013, which is little more than their enormous salary bill (the salaries quoted before will be gross)

    1958121_10203213680368132_695734687_n.jpeg
    Last edited: Feb 23, 2014
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I have taken part in more surveys and consultations than I can remember, and spent a lot of time on them. I can't spare any more at the moment as I need my limited time and energy for other things, such as basic tasks and keeping the wolf from the door. I am now leaving it to others.
    peggy-sue likes this.
  6. peggy-sue

    peggy-sue

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    I've given up reading or posting on the AfME site. It is unbelievably slow to load each page and it is difficult to follow. I can't find stuff, things disappear, they can't even sort my username out, but use my real, full name, despite my asking to have it removed.
    Min likes this.
  7. Min

    Min Senior Member

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    Their accounts show only £9k a year allocated to IT.

    staff costs 1012563_10203213311798918_201026791_n.jpeg
    Firestormm likes this.
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Have you tried editing your profile?

    It used to be really bad re the name issue, and showed everyone's full name, until a way was found by members to fix that - changing our 'real name' in our profiles to a made-up one! AfME frowned on this as it allegedly caused problems with their records (tough). I continued to alert people to how they could change them.

    When I was last using the forums, that had been fixed, so you should be able to create a username in your profile page. Sorry I can't tell you how to get to the profile page as the website is playing up AGAIN, but I think the link is near/at the top of the main pages.
  9. peggy-sue

    peggy-sue

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    Thanks, both Min and MeSci, but I got completely confused trying to do that, I just gave up.
    But I'm still absolutely furious that they publish my real name.

    That useless setup costs 9K a year?
    I've got a relative with ME who could do a far better job in his sleep (that would be essential!) for half the price.:angel:
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Similar things have been said on their forums! It is very amateurish.
  11. peggy-sue

    peggy-sue

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    Folk would be better off "meeting" there, then toddling off and forming a google group themselves. That's free... and it works better.
    I'm afraid I thought it just went along with everything else AfME does. A lot of (meaningless) words and no action.

    And an effective way of silencing folk who don't "toe the party line" and worship at the feet of the psych lobby ex-spurts.
    Min likes this.
  12. Snowdrop

    Snowdrop Senior Member

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    As far as the salaries go, it seems like an awful lot especially when compared to over all revenue but I'm told by my husband that SC's salary for example is in line with middle management salary at this time which is normal for a charity CEO. She could make more in the private sector.

    There is the issue of; are all middle management and above salaries inflated of course. (Yup). But it doesn't put the salaries at AfME out of line.

    There is the problem of how they use what's left and why they can't manage to raise more. Although again we're not the most visible charity. Perhaps that's what needs to be changed.

    I know I'm not from the UK (my daughter plans to stay though) so AfME really isn't my issue, but in a larger context it would be good to see AfME do the right thing and keep their promises. Making ME more visible is all our concern and I have been thinking on that for the past while since the IoM horror started. But of course what I do I do slowly. But making our concerns know, to the supplements industry as to what we want and expect, the the charities that supposedly support us, government, the public.

    We need to work more coordinated and effectively building on what is there (having something ready for when "Canary in a coal mine" is released, for example.

    Sorry if I went off topic.
  13. Leopardtail

    Leopardtail Senior Member

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    Well the way I looked at it was this. The AfME has the size and turnover of a small company a CEO salary there would certainly be no more than she earns. 'Middle management' in Britain would generally earn less in any organisation that had them.

    What concerned me more greatly though was the average of all the other salaries. The mean salary of the other pay grades (below CEO) is over £50k. For that to be average salary of any organisation raises serious concerns about how well payroll is managed. Add that the the poor research funding and I am left asking questions.

    I also noticed under the 'assets' that they have been losing capital and there has been no great uplift in funding.

    Regards ME charities in general. The question I keep seriously asking is why we need two major ones (The ME Association and Action for ME) it divides our voice which is not a very strong one to begin with. I agree completely that 'visibility' needs to be improved. I think our charities need to be engaging with Panorama, Dispatches, day time chat shows for Mum's and getting the word out about how we are treat, how poor services are etc. We need an 'Oprah effect' to get people who are able bodied and able minded pissed-off and unwilling to stand for it.

    The tragedy of our illness is that (in contrast to the deaf, or the blind) we can't run our own charities due the that very lack of energy and lack treatment. I do agree though we need to find some way to be more organised and more proactive in fighting our own corner. All to often now we are represented by Doctors who are only slightly better than the one's persecuting us. They have the same disdain for everything that is not 'a drug' and the same over-emphasis on massively expensive placebo controlled trails of too few measures, while at the same time being unwilling to repeat trials/treatments on a larger scale tat show success.

    There is too much ego around in ME research and too little genuine service.

    It has occurred to me that an international, patient run, research fund, that allows us to decide which research got done would be a far better proposition. Equally where research has shown something productive it would allow us to get it repeated.
    Last edited: Feb 23, 2014
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't think it's a good argument to say that because salaries are high in the private sector they should be similar for charities. I believe in setting good examples rather than doing what others do. I also completely reject the often-repeated argument that high salaries are needed to attract the best people. High salaries attract the greediest people. If someone really cares about a company or a cause, they will not be seeking high financial reward for their work - it should be reward in itself to a considerable extent.

    As for AfME's fundraising, they invite suggestions for fundraising and then reject most of them. I suggested something that would be relatively-easy to do, mostly by members with AfME just doing some coordination, and would also raise a lot of awareness, and they replied that they didn't have the resources! I could have done a lot of it on my very-basic computer, and I could also have produced a much more professional pdf of their accounts than they have done!

    If I had suggested something stereotypical like a marathon or skydiving, they probably would have said yes.

    They have also demonstrated a lack of understanding of ME by having giveaways of artificially-perfumed toiletries, etc.
    Last edited: Feb 24, 2014
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  15. Min

    Min Senior Member

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    We have an excellent volunteer run UK charity funding high quality biomedical research and conferences for medical professionals, Invest in ME. They refuse to work with the Wessely school of psychiatry.

    I really can't see why we also need Action for ME who spend almost the equivalent of their charitable donations on fat cat salaries, and who are, in my opinion, betraying us by working so closely with the Wessely school of psychiatry. For me, their ultimate betrayal has been their involvement in the PACE trial.
    Valentijn and peggy-sue like this.
  16. peggy-sue

    peggy-sue

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    I feel a strong rebuttal of PACE and a public announcement decrying the disproven psychiatric theories would do their reputation lot of good, as would a committment to never getting involved with them again.

    Coming from AfME, that should hold water in the mainstream press?
    Valentijn and Min like this.
  17. Esther12

    Esther12 Senior Member

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    Speaking as someone who wasn't really opposed to PACE when it was first proposed, but has been utterly disgusted by the way in which results have been spun since, I don't think that their involvement was a problem, so much as their refusal to use their status as an insider to actually represent patient interests, ensure that important data was collected, and ensure that results were presented in a reasonable manner.

    The specifics of their involvement with PACE are far more of the problem than the fact that they were foolish enough to get involved in the first place imo (admittedly, I do feel somewhat foolish myself for not being more cynical about PACE from the get go).
    Valentijn and Min like this.
  18. Leopardtail

    Leopardtail Senior Member

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    I have to agree Esther, the problem with the involvement of Psychiatry and Physiotherapy in ME is not the disciplines themselves, but the quality of the individuals. That Whyte and Crawley continue to be involved in the MRC disgusts me - it is an afront.

    If CBT is targetted at discarding thought processes that waste energy it can do a lot of good. It it is targeted at removing the constant guilt that people with ME are encouraged to feel it can do a great deal of good. Likewise learning to pace physical activity in order to increase energy rather than reduce it can also do a great deal of good. Central to either form of therapy being successful is respect for the patient rather than arrogance and ignorance.

    For me what's centrally missing is the involvement of people with ME in designing, monitoring and commissioning research -.ditto with treatment.

    Ester, "the right stuff" did a slightly more even handed piece on ME some time ago. Have you thought about contacting them re the PACE farce?
    Min likes this.
  19. Esther12

    Esther12 Senior Member

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    A lot of it requires a lot of work to understand, so may not be ideal for a daytime show? Not sure (also, I've got other stuff I'm busy not doing!)
  20. Leopardtail

    Leopardtail Senior Member

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    They have a dedicated team that research issues heavily. The issue of candidate selection alone is simple enough to be understood. I realise you may have too little time or energy for this but you do stand a good chance of the issue getting aired and he does seem to have a relatively bright audience.

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