ALL AUSTRALIANS!

[Megan]

All Australians - please join our campaign to the Federal government asking for more medical research, treatment and support services for people with ME/CFS!

The attached letters have been drafted by the newly formed ME/CFS Australian Patient Advocacy Netwok (MAPAN) in collaboration with the ME CFS Society of Australia/Victoria.

We wish to send as many copies as possible to the Ministers office to let him know the desperate need we have for more support for our illness. Use patient power to make a statement to government!

Click on the below links to print out, fill your details, and send. One letter is designed for patients to send and the other one is for your family and friends.

Instructions:
1) click on the links below and print a copy of the letter
2) write your name and address above the date in the top right hand corner
2) if signing the family/friends version, state your relationship to the person with CFS in the space provided in he first paragraph
3) print your name and sign in the space provided at the end of the letter
4) send to the address on the letter

Thanks for your help!

Please do not sign and send this letter if you are not Australian, as we want the Minister to be aware that this letter is coming from Australian constituents.


EDIT: A minor revision, requesting that copies of replies are cc'd to the ME/CFS Society of Australia, has been made since the initial release of this letter. It is understood that many copies have been sent, so don't worry if you have used the old version. This change was made at the request of the ME/CFS Society as they wish to be aware of other politicians who may have received the letter.

Also, we have been asked by many people why this letter is addressed to Mark Butler, the Minister for Mental Health and Ageing, rather than the Health Minister, Nicola Roxon. The answer is that he is responsible for the National Health and Medical Research Council (NHMRC), who provide government medical research funding for all illnesses and also for support service funding. These are the two issues addressed by the letter, so rest assured the letter is addressed to the right person!

 

[Megan]

If you dont have a printer, or would prefer to email, note that the ME/CFS Society are expecting to get automated copies of the letter up soon on their website so that you can just enter your details and the Minister will receive an email. But it is better for people to send printed copies if they can, as we understand that emails may not have the same weight as a hard copy letter.

If you have any further questions about this campaign, please ask here and we will endeavour to respond.

 

[Megan]

Who are the ME/CFS Australian Patient Advocacy Network (MAPAN)?

MAPAN is a group of ME/CFS patients whose ultimate wish is to recover. We are asking fellow patients and other supporters to join with us in lifting our sights to advocate for appropriate medical research and treatment for our illness.

We work in partnership with and wish to support ME/CFS Australian and state societies. Our approach is to establish a network of patients, carers and other interested people to draw on our skills, contacts and desire for change.

Our vision is that every ME/CFS patient in Australia has access to effective treatment and has a life with dignity, understanding and respect.

For more information please see our facebook page for an explanation of who we are and what we have been doing http://www.facebook.com/pages/MECFs-Australian-Patient-Advocacy-Network-MAPAN/145042998895538


MAPAN ORGANISATIONAL INFORMATION
All Australians supportive of our aims are welcome to become formal members of our organisation. To join please express your interest by emailing mecfsapan@gmail.com and we will forward you a membership form. There is no joining fee.

 

[heapsreal]

Cool, i have printed a copy and ready to send off. Is there actually an me/cfs web site? I do frequently read the South Aus me/cfs society web site but in the past the Qld site doesnt appear to have been updated for along time. An online forum would be good. Im not really a facebook person and dont like the facebook concept as Im not keen on others, especially my employer and other employees knowing details about me as i think it could effect my employment. It would be good if we could have a seperate aussie forum here for specific things related to cfs/me in australia.

Congrats on organising this letter, its a good move.

cheers!!!

 

[Francelle]

Will get onto it ASAP, Megan. Also will forward the friends/family copy onto a few sympathetic others and hopefully they will respond too!

 

[Tulip]

I am a bit worried that the letter isn't clear enough in regards to the subsets. I personally think it should be stated that M.E. should have it's own catagory followed on by different subsets of CFS. M.E. is it's own entity and as most of us know, it's not the only illness chucked into the CFS basket. I am also a bit worried that using just the Canadian Guidelines will still lead to a blurring of the research lines. It would be good if Dr Byron Hydes definition of M.E. could somehow be included as it relates to the orginal definitions of M.E., before the 1988 term of CFS was introduced. I think this is vital for proper research.

Heapsreal, you could always join facebook under a fake name with no face pic or any identifying info, just create a new email that no one could trace you with to join up.

Megan, the facebook link isn't working..

 

[Megan]

Heapsreal,

I take your point about Facebook, but we have chosen this as the lowest cost/maintenance option at this stage as we are all sick. The way the page is set up you should be able to access the information without being a facebook user, but would have to create a facebook account to partake in discussions. If you google it there are guides on how to set up an account with maximum privacy options.
eg. http://mashable.com/2011/02/07/facebook-privacy-guide/

The ME/CFS Australia websites and Victorian ones are as follows

http://www.mecfs.org.au/
http://www.mecfs-vic.org.au/

 

[heapsreal]

Maybe could say more about infectious and immune research, just so they dont start pumping money to the psychobabblers, just a thought?

 

[Tulip]

Megan, it needs the #!/ removed from the link otherwise it goes straight to facebook.com.

This link works: https://www.facebook.com/pages/MECFs-Australian-Patient-Advocacy-Network-MAPAN/145042998895538

 

[Megan]

Hi Heaps and Tulip,

Yes, there's heaps more we could be asking for in the letter, but it is hard to put it all in without losing the main points. That's one reason we asked for ongoing participation of patient advocacy groups in determining research directions, as a whole range of issues need to be discussed. We asked for the use of the Canadian Diagnostic Criteria as we undestood that this is one thing most advocacy groups agree is a better definition, even if it's not perfect.

We requested 'physiological' research and infectious agents to be clear that we don't want the psychobabbler stuff. I would expect that point will be made loud and clear by our Society in any follow up discussions.

The ME/CFS Society have approved this letter and copies have already started going out, so we don't want to be doing any revisions at this point. But your points are noted and we are hoping to follow up with more letters to others so will take such comments into account.

We took copies to an awareness week forum in Melbourne last week and many people signed. Some wrote a personal message about how ME/CFS has affected their lives into the margins - this looked really good.

 

[Megan]

Thanks Tulip,

I've altered the facebook address, tell us if it's working now?

 

[insearchof]

Hi Megan,

Great to hear that a patient advocacy group is up and running in Australia.

I am ME advocate Megan. To understand where I am coming from on this matter I refer you here: http://forums.phoenixrising.me/showthread.php?10962-Is-it-worth-explaining-the-difference-between-ME-and-CFS-to-the-public. Please read my post referred to by Tuliip at the start of that thread.

As an ME advocate, I have a few questions if you don't mind Megan.

Tuliip said:

I am a bit worried that the letter isn't clear enough in regards to the subsets. I personally think it should be stated that M.E. should have it's own catagory followed on by different subsets of CFS. M.E. is it's own entity and as most of us know, it's not the only illness chucked into the CFS basket. I am also a bit worried that using just the Canadian Guidelines will still lead to a blurring of the research lines. It would be good if Dr Byron Hydes definition of M.E. could somehow be included as it relates to the orginal definitions of M.E., before the 1988 term of CFS was introduced. I think this is vital for proper research.

I agree with these observations.

ME has been recognised by over 50 years or medical literature as a distinct and separate illness, CFS being introduced in 1988 and the boundaries being blurred by the employment of the term ME/CFS.

ME has been given a classification by the WHO in the tabular body of ICD 10AM at G93.3. CFS does not have a classification there or anywhere else under ICD 10AM.

''ME/CFS'' is not a term recognised by the WHO ICDs or the CDC or ME experts or advocacy groups.

ME is a distinct and separate illness, as is recognised not only by the WHO but also by the CDC:

Amy Blum, Medical Classification Specialist at the National Center for Health Statistics ( a division of the CDC) who reported in July 2009:

ME is not considered a synonymous term for chronic fatigue syndrome in the United States.

See: http://www.hfme.org/wlicdcodes.htm.

And this from the CDC website on CFS:

The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS

See: http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html

Whilst there has been discussion regarding the need for sub sets in CFS, ME as a separate and distinct medical illness cannot be regarded as a subset of CFS.

Moreover, CFS being a diagnosis of exclusion, requires all other disease and illnesses such as ME to be excluded before arriving at that diagnosis. Subsets may be an appropriate term to use for further research into CFS, but is in my view an inappropriate term to use in respect of ME and needs to be avoided - to remove unnecessary confusion.

There has been however, a lot of discussion in the CFS and ME community recently (and in this forum) on the need for more stringently defined co horts. There is also recognition in this forum for the need to have ME (as defined by the historic ME literature) to be recognised and acknowledged, independently of any CFS definition CCC CFS or otherwise. If both groups are to benefit from unpolluted research results and use the findings to aid further research and treatment for both groups, this is vital. Precision in selecting scientific co horts should not be too much to ask for or expect.

Therefore, Australian ME advocates expectations of a new advocacy group purporting to represent the interests of both ME and CFS patients would be promoting something along these lines as set out here: http://forums.phoenixrising.me/showthread.php?10962-Is-it-worth-explaining-the-difference-between-ME-and-CFS-to-the-public&p=180477&viewfull=1#post180477

I note that your vision states:

Our vision is that every ME/CFS patient in Australia has access to effective treatment and has a life with dignity, understanding and respect

I would hope that this includes ME patients as defined by the historic ME literature and not simply CCC CFS patients, as I take it that the term ME/CFS (which is used ambiguously by CFS organisations from the perspective of ME advocates) means that you are advocating for both groups.

Of course it could also mean that you believe ME and CFS are one and the same illness, in which case you would not be making the distinction and or advocating for ME patients.

Could you please clarify your groups position on this?


As a new group purporting to advocate for ME and CFS, it would also be the expectation of ME advocates in Australia that your group would:

(a) Have sufficient knowledge and understanding of what ME is (as reflected in the historical ME literature pre 1988)

(b) Ensure that your literature and communications - including talks to medical doctors (that you purport to make on behalf of the ME patients), promotes this distinction clearly

(c) Advocates for research, treatment, education and facilities into enteroviral ME in equal measure to CFS

(d) Promotes the medically recognised definition of ME alongside of the CCC CFS definition.


Given that, I would like to know:


1. If your group is purporting to act for both ME and CFS patients, why your letter addressed to members of our federal parliament, fails to mention the above?


2. Does your group recognise the distinction between ME -as defined in historical ME medical literature pre 1988 and CFS as discussed here: http://forums.phoenixrising.me/showthread.php?10962-Is-it-worth-explaining-the-difference-between-ME-and-CFS-to-the-public


3. To what extent has your organisation promoted the distinction in other literature, or at its medical talks (I note that it is promoting to doctors in Australia), and or is prepared to do so? If not, could you please explain your reasoning?


4. Are you an incorporated organisation, and do you provide details on the office bearers and general information on their knowledge (especially on ME) and the experience and skill sets they bring in purporting to advocate for both ME and CFS patients across Australia?


5. I note that you state that you are working with the ME CFS Society of Australia. Can you explain the exact nature of your relationship with it?


If you are a part of the Society or are working with them, how does your group propose to offer an alternative position independent of and free from the influence of the Society, for any of us who might be less than happy this arrangement?


I would appreciate if you could answer these matters for the benefit of all Australian ME and CFS patients who might be considering whether and or the extent to which, they might like to support this new patient focused group.


Thank you Megan your time and effort is appreciated.

 

[Megan]

To clarify a few of points about the ME/CFS patient advocacy network and the issues raised above.


Our relationship to the ME/CFS Society:
1) We are a group of patients wanting to do more advocacy work. We have come to an arrangement with our ME/CFS Society that our committee members are volunteers of the Society but members of MAPAN do not need to be members of their State societies if they dont want to. Our committee is free to set our own priorities. These details are explained on our Facebook page.
2) We think it is strategically important for us to be as coordinated with them as possible, regardless of disagreements, so that we can have a stronger united voice. The Society as I understand it has two paid part time staff who are working relentlessly on our behalf. The major issue faced by them is one of resourcing, hence the need for patients to help if we can.

Regarding the ME/CFS issue:

The MAPAN committee have agreed on the principle that we will endeavour to keep an open mind to all physiological theories in relation to the causes and treatments of ME/CFS (ie not psychological).

In Australia ME/CFS are used interchangeably. In reality most people here with ME would have a diagnosis of CFS.

We understand that there is a host of debates on the issue of ME vs CFS, various diagnostic criteria, subgroups and possible causes for the illness(es). It would be impossible for us to satisfy everyone in relation to these matters, but as stated above, we would support research into promising leads that are physiological in nature (including enteroviruses). Hence the request to use subgroups for research purposes in the letter.

Regarding the talk being given to doctors.
The presentation is being given by Dr Don Lewis, an ME/CFS doctor of many years standing. The patient part of this will be very short and simply relating one persons experience of the medical merry go round and what they think could have been done better.

I hope the above goes some way to answering enquiries.

 

[insearchof]

Hi Megan

Thank you for your post. However, there seems to be a few matters that were not addressed and which require further clarification. I would be greatful if you could attend to these for the benefit of Australians with ME and CFS.


MAPANS relationship to the ME CFS Society of Australia.


From your reply, I understand that what you are saying in effect, is that this is a committee (an unicorporated association?) and possibly a committee of a state ME CFS Society (but this is not made clear) and or that your group are volunteers/members of a state Society and from viewing the website belonging to ME CFS Society of Victoria, it would appear that it is the ME CFS Society of Vicotria?


If your group consists of volunteer members of the ME CFS Society of Victoria and or a committee of that Society, (this is not clear, as you suggest you are working closely with them and that they are working hard for you) then the scope of your operations and mandate will at least to some degree be governed by or at least compromised by the views and agenda of the ME CFS Society of Victoria to some extent would it not?

So it seems from what you have said that MAPAN is a group of volunteer members of the ME CFS Society of Victoria - and possibly a committee of the ME CFS Society of Victoria. It does not appear to be entirely independant of the ME CFS Society of Victoria, and is not an incorporated association.




So, I once again put it to you:

If you are a part of the ME CFS Society of Victoria or are working so closely with it- how and what assurances can you provide that your group propose to and or can offer an alternative position independent of and free from the influence of the Victorian Society, for any of us who might be less than happy with the current arrangement?


Further, if MAPAN is in effect a committee of the ME CFS Society of Victoria staffed by unelected voluneeters, could you please make this clear (if you have not already done so on your website and face book pages etc) and otherwise, when you are promoting this group.


I think it is important for Australian ME and CFS patients to understand what the true nature and extent of MAPAN and its operations and whether it is in effect the ME CFS Society of Victoria (a sub committee) and therefore has a mandate to speak for Victorian Society members only.

If it is not a sub committee of that Society, but a group that is simply working with it - then could your group provide public profile information of its committee members and detail their knowledge and skill sets etc - so that members of the Australian ME and CFS community know who they are and the extent to which they wish to support their activities and or become involved in them.


What and who does MAPAN represent?

In Australia ME/CFS are used interchangeably.

In reality most people here with ME would have a diagnosis of CFS.

We understand that there is a host of debates on the issue of ME vs CFS, various diagnostic criteria, subgroups and possible causes for the illness(es). It would be impossible for us to satisfy everyone in relation to these matters,

It seems from the statements you have made here Megan, that MAPAN is saying that:


a. they do not and have no intention of distinguishing between ME and CFS


b. that as ME persons represent a minority in Australia, their advocacy needs are not material as most people have a CFS diagnosis


c. it is not possible to advocate for the interests of those with an ME diagnosis


Is this a fair assessment of your groups position? Your clarity and confirmation on these matters is very important, especially to those Australians with an ME diagnosis, as I am sure you can appreciate.


ME advocates in Australia are well aware that the terms are used interchangeably, and they are campaigning against this.

The MAPAN committee have agreed on the principle that we will endeavor to keep an open mind to all physiological theories in relation to the causes and treatments of ME/CFS (i.e. not psychological).

It seems to me from your statement above, that your groups knowledge is either limited or they are ignoring the historic ME medical literature and research, which is I am afraid neither a theory or theoretical.


Megan, could you please answer these question directly:


What is the extent of your group members knowledge and understanding of what ME is (as reflected in the historical ME literature pre 1988)?


Does your group recognize and understand the distinction between ME -as defined in historical ME medical literature pre 1988 and CFS ?


Thank you once again.

 

[Megan]

insearchof,

I will clarify a few more things but do not intend to debate further than that as I can simply not afford the energy to go into and endless debate.

Yes, we are largely Victorian based at the moment but we have members from other states and would like more. If you are aware of the Australian situation you will know there is significant overlap of office holders of the Victorian society with the Australian society, including the same CEO (who is working for all Australians), so if this boundary appears a bit fuzzy, thats because it is. We are building up our committee at this point and are expecting to have committee members from other states very soon. No we are not incorporated, and we have been clear about our relationship with ME/CFS Victoria and Australia from the start (it's on the facebook page).

Will the Society influence us? Yes, I expect they would in some respects, but we might also have some positive contribution to make to them as well. As I said for the reasons listed in my last post, this seems to be the only logical way for us to proceed. The letter we have drafted in conjunction with them is a positive example of the type of thing we hope to do. People can read it and judge for themselves, there is obviously no compulsion for anyone to send it or join our group if they disagree with our approach.

As stated previously our committee has agreed to keep an open mind to all physiological (not psychological) theories in relation to the causes and treatments of ME/CFS.

With respect to knowledge about ME as distinct from CFS, I can only speak for myself, but I am aware that there is a history here and well understand Byron Hyde's definition of ME and his reasons behind it. I think there is a lot to be said for the idea that there needs to be more testing to rule out other treatable conditions that could be in the CFS mix. However, at this point I do not consider any one particular causal theory to be proven, whether in relation to ME or CFS (and yes, I consider all possibilities including Hyde's and enteroviral to be theories). Hence I would support the notion that we should be open to all possibilities, including enteroviral.

As I said above, I don't want to engage in endless debate. I have tried to be as clear as I can so I think I will have to leave it here. I see the other thread goes for 45 pages or so.

 

[heapsreal]

So Megan, becoming a member, does this allow us to see minutes of meetings etc and to give feed back on our opinions etc. Also is there going to be sesions with doctors interested in cfs and maybe looking into import laws with medications helpful for cfs like GcMAF, antiretro's and maybe even xyrem or these could be pushed for with this organsiation for cfs patients??? I think even a small group of docs in each state treating cfs patients with the latest meds could be an aim, maybe even basic antivirals like famvir or valtrex covered by PBS could also be pushed for??

Just some furture thoughts??

Cheers!!!

 

[insearchof]

Hi Megan

I am sorry you have seen my questions as an attempt to debate issues with you. I have no intention or desire to do so Megan. I am simply asking questions that I think most Australians would like to know the answers too, especially those Australians with an ME diagnosis.

So rest assured, that is all that I am doing. If you would kindly answer my questions, I will leave it there.

I also held no expectation that you would read that 45 page thread, but would have hoped that you had read the note on the first page of that thread which explains where I stand on the issues generally. If you chose to ignore that, - its really fine and no big deal.


Though I understand the limitations of our health, I think you have a responsibility to make time to answer questions of the nature I raised, as you are promoting yourself to the Australian public and calling for membership from members of the ME and CFS community in Australia.

Thank you for confirming that you are an unincorporated association.

However, you keep referring to ''our committee'', but you have not clarified whether this is a committee (ie a sub committee) of the Victorian Society or for that matter the Australian Society, given you made mention that you are seeking committee members from around Australia. Could you please clarify this as this is quite an important point that you seem to have overlooked. You are either an independent group or you are a sub committee of an existing CFS organisation. One is very different from the other and the public has a right to know especially those wishing to join and or offer support to your group.

If you are not a sub committee of a CFS organisation, but an independent unicorporated association or group -I think it is also appropriate that your ''committee'' provide personal profile details (ie of skills, knowledge on ME and CFS etc) on your facebook page etc, as most organisations do, as well as a statement of what and who your group purports to represent and where it stands on issues such as the ones I am currently seeking clarification on. The public likes to know who they are dealing with and whether they wish to support such people in their activities.


Thank you for sharing your knowledge and understanding on historical ME. I would only say, that with respect to ME theories not having been proven and on the issue of causation, that it might serve you to read more widely. Hyde does address this, but there is 50 years worth of medical literature on the matter which does also. I have no intention or desire of debating the issue with you however.


However, I would like an answer to my questions which you have ignored, so I will put them to you once more.


It seems from the statements you have made here Megan, that MAPAN is saying that:


a. they do not and have no intention of distinguishing between ME and CFS


b. that as ME persons represent a minority in Australia, their advocacy needs are not material as most people have a CFS diagnosis


c. it is not possible to advocate for the interests of those with an ME diagnosis


Is this a fair assessment of your groups position? Your clarity and confirmation on these matters is very important, especially to those Australians with an ME diagnosis, as I am sure you can appreciate.


Can you please confirm:

the extent of your groups knowledge (other than yourself) and understanding of what ME is (as reflected in the historical ME literature pre 1988)?

and

whether you and your group recognizes and understands the distinction between ME -as defined in historical ME medical literature pre 1988 and CFS ?

Please do not feel compelled to answer straight away, if you are not certain as to their knowledge. Please feel free to make enquiries with them first.

Once again, I am not looking for debate, but answers from those who purport to represent the interests of Australian ME and CFS patients, of which I am one. I am sure that others may also have their own or similar questions.

I do not think these questions are unreasonable or in point of fact, raising questions of this nature unreasonable and I am sorry if my questions are making you defensive, or uncomfortable, as it is not my intention to do this, but simply to seek information and clarity, in order to know the degree I am prepared to support your group and or become involved in assisting it. I also see that some others have began to post their own questions possibly with a view to making a similar determination. If you want the Australian ME and CFS patient community to support you, then I am afraid that you are going to have to take time to address these concerns and do so to their satisfaction, even if it is laborious or not something you are keen to do. On this point, you might like to look at the thread in the advocacy area of the forum on the CAA poll and you will see clearly, that the patient community is tired of being dismissed and not listened to by organisations, be they formal or otherwise. Your group might do well to note this if you want support from Australian patients and if that means a 45 page thread of questions, then I would suggest you call your committee to assist in answering them. Fail to do this, and you risk failing full stop, IMO.

We live in a time when patients in the ME and CFS community are clearly dissatisfied, their expectations are much higher and they are generally far more discerning than they once were. I am sure that you can understand this and it may have been the reason in part, as to why you elected to form your group. But do not under estimate the power of those patients who's questions and concerns that you simply dismiss because they are not important enough to you or your group to take the time to address and acknowledge. Again the CAA thread is a good illistration on this point. As a large perecentage of the patient community these days is most likely to be online, it would be worth your energy and time to answer the questions being raised here. If you doubt this possibility, ask yourself why the state societies have such small membership numbers and why the main ones like victoria generate a lot of its time towards maintaining and updating its website.

Just a friendly heads up.


Thanks Megan.

 

[insearchof]

Hi Megan

Whilst you are consulting your group to answer my questions,
perhaps you could also ask them whether they intend to put in a submission in relation to the APA DSM drafting proposals that will classify CFS as a somatic symptom illness.

As you may know, the APA is calling on the WHO to have their final changes reflected in the WHO ICDs which are currently being reviewed. We are currently moving from ICD 10 to ICD 11. AMAs changes are presently in draft form and sumissions from stakeholders is now open.

ICDs will have the effect of how physicians classify ME and CFS, and will have insurance and legal consequences. Such changes will also have an impact on future advocacy efforts...especially efforts promoting CFS as an illness with serious bio physical manifestations.

More information can be found here:

http://forums.phoenixrising.me/show...-5-v.-WHO-s-ICD-in-the-US&p=181440#post181440

 

[taniaaust1]

Megan said

I will clarify a few more things but do not intend to debate further than that as I can simply not afford the energy

Iso.. megan hasnt the energy to be answering all the questions and has said that to you. I suggest checking out the facebook site to get answers.

It isnt fair to be pushing one who is ill and hasnt got the energy to be doing long replies back trying to explain. Just reading your long posts is hard (Im struggling and actually wasnt able to read your long one, Megan is probably in the same boat as I know her ME/CFS isnt mild).

I think people should be grateful to those who are doing their best to try to change things and putting as much energy as they can into doing that rather then harrassing. (You may not realise it but you are coming across as being very harrassing). How can we ever expect others to respect our energy when as a community we arent respecting each others energy and needs.

From what megan has said.. it come across to me that the advocay group is independant (I think she may of said the word independant somewhere in her early post) but working with the society. (I may have that wrong but that is the impression I got).

How many in Australia has got a ME diagnoses??? I personally dont know of anyone here who has been "offically" diagnosed with ME.. so calling ME a subgroup of CFS is how things currently is here right now.

Saying something is a subgroup I dont think says that one with CFS is the same as another who has CFS at all... but it appears you are thinking along those lines appear to be getting offended when people refer to ME as a subgroup of CFS when here in australia like it or not it's called ME/CFS.

There are so many battles to fight with the illness that one has to start somewhere (what's that saying "Rome wasnt built in a day".. and advocating funding for research of the various subgroups is a good start. One cant say that isnt helping ME or that ME is being ignored when they are bringing attention that there are different subgroups which should be researched and calling for physiological research only.

Please dont give those who are trying to help the rest of us a hard time... it actually ends up making some stop advocating for us when we really are needing it.

(sorry if my post offends... You were coming across as if you were trying to attack Megan so I found your post distressing).

......

If you didnt like the letter for the minister and disagree with it just change it or write yourself another one IF YOU WISH to send one. I havent been doing the advocany Ive been wanting to do due to lack of energy/brain to put a good letter together with references.. so this letter is of great help to me and others and enables people to do something easily.

 

[taniaaust1]

Megan... that letter sounds great. Thanks to who ever wrote it as it included many important things and I think was written to cater for most.

I therefore strongly urge that you
redress the imbalance in research and service provision funding by supporting:
the allocation of five million dollars annually to ME/CFS research
prioritisation of physiological research that seeks to identify the cause(s) and
successful treatments or cure for ME/CFS
the use of the Canadian Diagnostic Criteria and, where appropriate, the identification
of further sub-groups for research purposes
the expediting of research into the role of infectious agents in ME/CFS
the participation of patient organisations and ME/CFS doctors in determining research
directions
and the provision of ME/CFS specific support services for patients across Australia.

Very reasonable sounding requests which I think would be considered as they dont sound at all far out and are easily understandable to people.