May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
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Discussion in 'Action Alerts and Advocacy' started by Megan, May 20, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    i think the ME and CFS debate is a way the govt can divide and conquer, i think we need to join forces and sort out the nitty gritty later.
  2. insearchof

    insearchof Senior Member

    Hi Tania,

    My post to Megan was very clear.

    I have no intention to debate these issues, I am simply looking for answers to my questions which were not available on facebook,

    Megan, unfortunately uses the term ''committee'' which I, personally have found confusing. I am still uncertain whether her group is a sub committee of the specific society I referred to. She has also not, as yet, addressed the questions I posed, which I and others would like to know.

    My post made it quite clear, that I did not expect Megan to come back with an immediate reply. However, I would like to make this point - that Megan obviously has more health than I have, in order to do what she is doing Tania. I am bed and housebound.

    Further, this is a group that is calling publicly for members across Australia, and whether you like it or not, that comes with a degree of accountability to respond to enquiries by potential members. We are not simply talking about a member of this forum Tania.

    Others, including myself have fielded similar questions and issues directed to other recently forming groups here in this forum. Why should this one be any different?

    Irrespective of your lack of awareness or knowledge on this matter, it does not change the fact that they exist and they are here in this forum.

    If it were so obscure Tania, then why are state and Australian Societies even using the term ME?

    This is your own perception Tania - but please stop!

    I think my opening remark to Megan was that it was good to see the formation of this group.

    You have completely and utterly attributed an atttitude to me an intention that is not there and is not warranted. It is only causing trouble. Is that your intention here?

    The post by the way, was not directed at you. As you state, you do not have ME so these questions do not have any relevance or significance to you - as you have made it very clear. But please do not close down, an opportunity for those of us here and across Australia, that have ME to make these enquires.

    Please also consider this - that your own post I found a personal attack. To let you know the effect your words have had on me - I am sitting here shaking like a leaf. Frankly, you need to ask questions of others, and check out whether your perceptions are accurate, rather than launch into allegations of this sort that are harmful and unnecessary. Please re acquaint yourself with the forum rules.

    Perhaps you would also like to consider that I and others who have ME are also are a part of this community and have needs and require representation. Perhaps a little respect this way, might be useful too.
  3. insearchof

    insearchof Senior Member

    Hi Megan,

    Just to be clear, I do not expect a prompt reply from you in regard to my queries or a long or detailed response.

    I understand that you suffer from CFS and will be struggling some days as well.

    I would be grateful though, if you or another committee member could address my questions and conerns as soon as you are reasonably able.

    Thank you in anticipation.

  4. Dainty

    Dainty Senior Member

    Lets all take a deep breath here.

    Megan started this thread requesting signatures from fellow Aussies to ask the government for more funding.

    Questions have been asked for clarification. Megan has answered many of them and declined further discussion on some, citing the need to conserve energy (something we can all relate to!).

    Now some feelings have been hurt. As a reminder to all: Please use the report button for any concerning post rather than responding to it. Another reminder: each one of us is at differing levels of health and ought to respect each other's suffering. We're all having a hard time.

    The purpose of this thread is to garner signatures for this letter and to raise awareness of MAPAN. Please stay within the specified topic.
  5. insearchof

    insearchof Senior Member

    Hi Danity

    This is what generated the enquiry.

    Megan was promoting the group and made reference to membership. It was more than a simple call in support of signatures to the letter.

    So, just to clarify, these subjects have been included as a result of her post at #3 and appear to be on topic.
  6. Dainty

    Dainty Senior Member

    Just to clarify, no claims were made about off topic posts.

    Members were requested to stay within the specified topic.
  7. Snow Leopard

    Snow Leopard Hibernating

    South Australia
  8. insearchof

    insearchof Senior Member

    Hi Heapsreal

    No Heaps, we are not even on their agenda here in Australia.

    A failure to listen to others, to acknowledge and embrace the issues they face or in some cases, dismiss their concerns outright ....simply because they represent a minority group: that does this all on its own. The government does not need to do a thing.

    I wish to qualify that statement and say, that this is not directed at anyone on this thread or MAPAN or any other org. It is just a general observation and comes from my general experience and participation as an ME advocate within the ME and CFS community over the years.

    The nitty gritty as you put it, has not been sorted out for 25 years. It's time to do that now, IMO and this needs to be done if we are to move forward together and if the science in this area, is to have any credible application to either group. These issues have been discussed elsewhere and I have no intention or desire to discuss them here. If you or anyone else is interested in the nitty gritty - then you can take a look at this thread here: A wiki area in this forum has also been created and it is building a depository of very good reference materials on the subject matter.

    Maybe it is not going to be possible to address the nitty gritty within existing orgs, but minority groups like pwME require accurate and adequate representation too. If its not available then Australian pwME need to know this and move forward - with this knowledge - quickly.
  9. Hi Megan,

    Thank you to you and MAPAN for composing this letter. I thought it was a well constructed letter for a first community approach to the government. ME/CFS is a very complex illness and it is not on the governments radar yet, nor are we receiving any mainstream media attention e.g. a current affairs, 60 minutes.

    I have written to our government on other issues before, if it gets to complex and complicated it will go into the too hard basket! we are trying to get out of that bin.

    By stating the facts as you did with the help of support organisations together we might get on their radar and achieve more funding which is required for research that will drive awareness, respect from medical leaders and possible approved treatments.

    The attached references and allocations was a good idea to give it more punch.

    I posted my letter today plus 9 from family members.

    Well done Megan. thanks

  10. insearchof

    insearchof Senior Member

    Hi Scotty

    I see this is your first post. Welcome to the forum.

    The letter was good, in so far as it represented people with CFS.

    Consider also that letters you wrote Scotty ended up in the bin for reasons other than your complicated attempts to explain the illness. Ie: they were just not interested.

    Further, I have written such letters to a number of organizations that explain the issues being raised on this thread...without complication and that were well received and responsive.

    Tuliip has done likewise.

    I am sorry to say Scotty, it is not a community approach because it failed to acknowledge ME and the ME community issues, which is rather strange, given their use of the term ME which has a legally recognized definition and use.
  11. Francelle

    Francelle Senior Member

    Victoria, Australia
    If no one does anything, nothing gets done!

    In my opinion we can pontificate about the way something is written and who has written it and whether it should be approached another way and in the end spend so much time arguing the negatives that we cannot move forward, as we are paralysed by indecision.

    Formulate a flawless treatise ISO and we will consider it. In the meantime Megan, well done!
  12. insearchof

    insearchof Senior Member

    I love that idea Francelle....hold me to the standard of "flawless" but near enough is good enough, for others. And a treatise, not a letter! Frankly, it should be the other way around as I am not soliciting membership from the public and promoting that I represent both ME and CFS patients!

    However, if I was to volunteer my efforts here, it would be a complete waste of time given the standard you expect from me, not to mention the fact, that it seems evident that no one supports what is being raised, because apparently no one has ME...yet groups like this one and CFS orgs are more than happy to use the term ME. If they do not represent persons with ME and are not prepared to or at least make the distinction they need to say so and stop using the term ME that has a distinct legal definition.

    I really do not care who writes the letter. Nor do I wish to quibble over small matters.

    A failure however to distinguish ME from CFS, which could be done in a line or two is not a small matter for a number of reasons but especially if science is to get precision in cohorts. Scientists and parliamentarians won't support what they remain ignorant on.

    I would also like to point out, that a failure to make this distinction to a member of federal parliament is not a position I would like to find myself in. It could prove rather embarassing if the same MP or others recieve information that makes the distinction clear and outlines the reasons for it. But I guess that is something that I won't need to worry about. As for pontification.....what's that saying execute in haste and repent at leisure?

    People who purport to represent both ME and CFS patients need to do just that or stop using the term ME. The same people would be wise to get an education on the historical ME literature and distinctions......because ME advocates won't put up with people advocating on our behalf who have not got a clue. We deserve parity to CFS patients. Just to be clear on this point, this is not directed at anyone person or org- but is a general observation and an expression of how ME advocates feel the world over, right now. The same point has been made to a number of other orgs on other threads here.

    With respect, indecision may be paralyzingly for you Francelle, but It certainly has not had that effect on me, other ME advocates or it appears on those who created MAPAN.

    But this might all be moot anyhow, as it appears that whilst CFS groups across the world are putting their efforts into matters like the one on this thread they have ***overlooked the importance of the APA DSM 5 amendments and ***have not been lobbying or lobbying consistently and hard enough ito would stop those changes... the outcome of which will mean that CFS has real potential to become lost to the new psychiatric criteria of Complex Somatic Symptom Disorder of which (tellingly) hypochondria will also now fall under.

    That new diagnostic definition will operate as an alternative diagnosis to CFS as well as a bolt on diagnosis to all those patients who have an existing CFS diagnosis. So in addition to CFS you may also find yourselves with a new psychiatric condition

    Although this is the American DSM, it is used in other countries and the APA is calling upon the WHO to reflect these changes in the ICDs.

    So the day is near, when PWCFS will be viewed as hyperchondriacs and no one is going to interested in research for this group, who are viewed with disdain.

    So whilst ME has been lost to CFS, it looks like PWCFS are about to experience the same frustrations suffered by ME advocates over the years as they attempt to separate CFS from CSSD in the years to come....and you can thank the international CFS orgs for dropping the ball and not doing more on this one if this comes to pass.

    *** Important edit:

    Recent info provided by "ME agenda" on this issue indicates some CFS orgs have made submissions last year in round one. The number that ME Agenda reports that she is aware of, appears small on my assessment based on the number of international Orgs and related advocacy groups. Others may have made submissions but chosen not to disclose such, but given the importance of the issue it would have been a good idea to communicate and highlight this issue to their members and the general community and to gather further support. When you learn of the efforts of other groups representing other illnesses likely to be caught by this new diagnostic category, you might share my concern. Or maybe not. Maybe you think this is an issue that should be left to the US. Unfortunately though, the consequences are likely to extend beyond the USA and therefore it is an issue that needs an international response.

    The deadline for the next submissions is 15th June 2011, for those of you who understand and appreciate the the significance of what I am talking about here.


    I am uncertain whether Australian Orgs were contacted, however ----------------------An email to the Australian and state orgs encouraging them to make a submission and reminding them of the deadline would not go astray.

    Because to quote Francelle:

    ''If no one does anything, nothing gets done! ''

  13. Cort

    Cort Phoenix Rising Founder

    I suggest that we restrict the issues of definition and subsets to researchers and patients and not bring them up with politicians. I can just see a politicians eyes begin glaze you want more money for ME/CFS???? you want more money for ME? You don't want $ for CFS..There are two different disorders in the same illness....???

    The message has to be clear and simple...Dragging our inter-community disputes into a politicians office will end up with us achieving nothing. We have to be willing to put those issues aside - in that situation - and work on the fundamental goal - getting more research funding.

    More research funding means researchers will have the opportunity to tease out subsets - at which point ME will be able to show its head and so will CFS.

    IMHO opinion there is too haggling about the smaller points and too little emphasis on the major points - which is getting people out there and advocating for more research.....Anybody who is trying to do that - god bless them!
  14. Cort

    Cort Phoenix Rising Founder

    I know these 'side issues' are important and that makes it easy to get sidetracked on them.....but I think more research will take care of all those issues and that should be our one focus.....

    INsearchoff's issues about ME will get resolved by the research..if enough research is done then it will become apparent if there is an ME subset characterized by infections, brain issues and whatever else and if there is a central sensitization (or whatever) subset with different issues and an orthostatic intolerance subset (as the Lights now believe) and any other subsets.

    On the other hand the ME issues WILL not get resolved - and by resolved I mean the gaining acceptance in the research community in such way that it is the subject of actual research - unless there is more research.. They will continue to remain the object of often fierce discussion amongst patients and some doctors and no one else....

    If the ME subset comes to the fore in a major way it will have to unfold naturally from the research - I imagine it won't even be called ME but you will know if you fit in it.

    Basically Insearchoff - I think supporting any increases in pathophysiological research funding will support your cause...
  15. insearchof

    insearchof Senior Member

    Hi Cort

    1. According to the work of Henderson, Gilliam, Shekelov, Parish, Pellew, Marinacci, Richardson, Ramsay, Dowsett, Mowbray, Hyde, just to name a few, together with the current position of the CDC: ME and CFS are two different illness not two different disorders of the same illness - no matter how much you, or others want to believe this or keep telling yourselves this. It is factually inaccurate.

    2. Despite the assertion made above, the message is clear and simple to those who have the requisite knowledge and know how to express it in similar terms.

    3. You are well entitled to your opinion of course, but I would like to see you tell Byron Hyde whos work follows on from and echos the collective published medical research and literature on ME stemming over 50 years, ( as well as the CDC's position on the matter), that he/the literature/the CDC are wrong and an entire illness, with its own WHO classification - (which CFS does not have) -is a small matter, that we need not concern ourselves with. In all seriousness Cort, would you be prepared to interview Hyde and put that to him?

    4. Cort I have no idea what your talking about with regard to ME within the context of a CFS subset.

    CFS, is a syndrome and is a diagnosis of exclusion. ME must be excluded before a physician will consider CFS, just like White and the Wessley school did in the Pace Trial. So CFS sub sets might find a lot of things, but unless its junk science, they wont find ME patients there. And junk science serves neither ME or CFS patients, in my view.


    Firstly, ME is accepted in the research community Cort. Admittedly it is a very small community. You are correct though when you say it is not ackowledged in the CFS research community.

    And do you think that international ME CFS orgs that claim to be representing ME patients as well, but who fail or refuse (I dont know which it is) to promote or acknowledge the distinction between ME and CFS, are likely to push for Enteroviral and associated ME research for ME patients? Over the last 25 years there has been over 3000 pieces of CFS research. I think there has probably been less than 10 studies performed in relation to ME over the same time frame. Thats pretty interesting especially when you consider that there are 10-15 million cases of enteroviral infections that are undiagnosed in the USA alone, every year in comparison to 500,000 cases of CFS. Hyde reports that he finds 25% of patients with an existing diagnosis of CFS, have been misdiagnosed and in fact have ME. Therefore we might say that there are 125,000 cases of ME every year in the USA alone that are not being diagnosed. This figure however, could be much higher.

    Further, how likely would this be if they chose to ignore or have little knowledge on the historical literature which would enable them to make the relevant distinctions that are discussed here: Pretty unlikely I would say, wouldn't you? ME as understood and defined in the literature, would not be on their radars.

    So what is going on here? Lack of knowledge? Lack of interest? A possible conflict of interest? I dont really know. Whatever it is - it certainly appears to me and other ME advocates, that ME has been shelved and or buried under CFS for 25 years


    How would you feel about this scenario Cort.

    One day you wake up to find out that CFS really has no credibility left. The DSM 5 amendments went through and they gave further credence and power to the existing assertions of the pscyh lobby that CFS is and always was, for most of those with the diagnosis, a somatic disorder : a series of unexplained medical symptoms - the only explaination for which can be the product of the mind. CFS orgs are withering on the vine and CFS researchers cannot get grants.

    However, ME research is going ahead and ME orgs which developed independently of CFS orgs, reject your pleas to lobby for further research on CFS. You are told: ''I am sorry Cort, we cant accord CFS that priorty, because no one is intrested in CFS any more. But if you look at the ME research currently unfolding, you might find little bits there that relate to you. Of course its not called CFS, but if you look hard, you will see yourself there. So be a supportive community member and get behind our research efforts, because you will benefit from these in the end. It might take more than 25 years - but you will benefit in the end.'' (assuming you live that long)

    This is a time of change - for us all in the ME CFS community. IMO Cort, if we can't go forward together, then so be it.

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