* ME/CFS Australia Press Release *

[Sherrie]

We need an Australian version of: Nightingale

 

[taniaaust1]

As for starting our own org, sounds good. But I really don't think anyone here is in a state of health where they should take on that kind of responsibility. I don't mean to rain on your parade, I share the frustration. But we must also put our own health & well-being first.
Don't underestimate the power of an individual either.

After having this illness for as long as Ive had, Ive realised that I dont carry any real power as an individual to make a difference... I cant even get my own dreadful story of ME/CFS abuse in a newspaper.. Ive really tried. The only difference which I think could be made is throu good orgs.

Yeah we are too sick to really be running orgs but if the ME community doesnt.. who then will? 14yrs is a long time to be waiting and waiting for change which hasnt happened. It is actually a form of looking after ourselves and trying to get our needs met but yeah.. I do understand what you meant.

I could only could get involved in something like that right now seeing my symptoms are being a bit better of late maybe due to the home support Im getting. (as long as meetings and it was all done online as I cant drive, I could partake in an org)

 

[Googsta]

Well, you make a difference here

 

[taniaaust1]

I watched a seminar by Dr Lapp (I think) where he said all the top specialists had agreed to call the disease ME but they still needed the CFS as most of the research was under that banner. We can't just drop it unfortunately.

All that CFS research and calling it ME research when the patients used may not have been ME patients.. is flawed in itself.... its a whole heap of watered down research with possibly only a third to a six of the patients having ME.
ME needs its own research being done.

Hearing it said as you did.. makes it sound like Dr Lapp is just wanting a name change like they did in England with calling CFS ME. Is that what he is trying to do???

 

[Googsta]

All that CFS research and calling it ME research when the patients used may not have been ME patients.. is flawed in itself.... its a whole heap of watered down research with possibly only a third to a six of the patients having ME.
ME needs its own research being done.

Hearing it said as you did.. makes it sound like Dr Lapp is just wanting a name change like they did in England with calling CFS ME. Is that what he is trying to do???

I agree. I personally don't think we are going to get anywhere without establishing subgroups either, I beleive that should have been addressed long ago.

I don't really know the story regarding Lapp. He said that many patients had an issues with 'CFS' so they all talked it over & agreed M.E is the correct term, it wasn't just him. I think they were mostly trying to do the right thing by us.

 

[heapsreal]

The problem is most of the research has been done on cfs not ME, fuduka criteria etc are what have been used. This criteria was used in the bond uni nk function study. SO alot of the information about low nk function and viral titres is more related to cfs and not ME. so if cfs and ME are very different, then alot of these experimental treatments etc if a cfs criteria was used to select patients then it may not be applicable to ME. Personally i think we will find it is mostly the same thing, the difference will be severity, types of infections and how deep these infections have gone and what damage is done. When people say ME is more neurological then cfs, i think ME people just have different parts of their nervous system damaged and maybe more severly.

 

[alex3619]

I agree. I personally don't think we are going to get anywhere without establishing subgroups either, I beleive that should have been addressed long ago.

Fukuda himself said that the Fukuda et. al. definition of CFS required subgrouping. That was in 1994, I think, it was an interview he gave somewhere. CFS was, according to Fukuda, never intended to be a definition set in stone with a very broad and heterogenous cohort. Nobody listened to him either. There are two opposing views: those who want to keep dividing the patient cohort so we do research on patients who are very simllar, and those who want an all encompassing wastebasket definition. That latter group is strongly dominated by the Dysfunctional Belief Model proponents. Bye, Alex

 

[taniaaust1]

Well, you make a difference here

but we arent making a real difference.. talking about it dont bring change, working as individuals hasnt brought much change. Im soo so frustrated with it all.

 

[taniaaust1]

The problem is most of the research has been done on cfs not ME, fuduka criteria etc are what have been used.

I think the big issue is.. the mixing of subgroups or different illnesses.. has played a big factor in maybe even why they cant find biomarkers of our illness. (there even could be different biomarkers for different phases of the illness?).

Grouping like symptom/sign groups together whether they are different illnesses or the same.. is more likely to lead to more abnormalities standing out and the only way to really get these groups split is be calling them different things hence forcing a split.

This should lead to more better studies no matter what group or subgroup you full under. I hate the situation, as right now I feel like there is no hope at all of a biomarkers being easily found due to very different ways of illness presentation.

 

[heapsreal]

I think the big issue is.. the mixing of subgroups or different illnesses.. has played a big factor in maybe even why they cant find biomarkers of our illness. (there even could be different biomarkers for different phases of the illness?).

Grouping like symptom/sign groups together whether they are different illnesses or the same.. is more likely to lead to more abnormalities standing out and the only way to really get these groups split is be calling them different things hence forcing a split.

This should lead to more better studies no matter what group or subgroup you full under. I hate the situation, as right now I feel like there is no hope at all of a biomarkers being easily found due to very different ways of illness presentation.

They have biomarkers, they just have to start using them, nk dysfunction, t-cell dysfunction, im sure there are others, but just using these for research studies is a way forward and pushing out people who are fatigued from depression without immune dysfunction.

Lets say they use one of the cfs criteria then add some type of immune dysfunction either nk or t cell, then add the 2 day in a row exercise tolerence test to measure PEM. I think that would be a start. The exercise test is probably going to rule out many bedridden people but its a start and rules out many non true me/cfs people for research studies.
just a thought.

cheers!!!

 

[Foggy]

The vic,tas,nt ME society seems really good, the perth chapter is total crap!

But its good news in the right direction.