but many ME/CFS patients do need "down time" . We cant be constantly working all the time re in fighting injustices re our illness which is hugely stressful and also does bring crashes to many of us. For me PR represents most of my social life and having some form of social life is important if people dont want to end up spiralling into things like depression.
I personally dont see anything wrong with this study at this point as some things are better about it then most and we do need geninue non biased studies to help support that exercise in us in harmful or not helpful as most of us know, so this study could turn out to be good. (what makes you think that this one is going to be a biased one?)
I'll write back if I find they are doing anything which would biased this study eg if they are discluding the more severe group who may still wish to join. (Ive been involved in studies done from the University SA before and so far havent experienced a bad/biased towards ME researcher from there, I dont know this one but I think we shouldnt judging too fast just cause you may not like the study topic.
So what, her thoughts about this illness are probably wrong right now due to stuff she's read (thou on other hand this one seems well read as she knew to have the 2 day exercise test), well how about allowing her to scientifically get some results with a good patient group herself, she could end up being supportive about exercise is a poor therapy for us.
As far as Im aware this researcher isnt indoctunated in her views of us and this illlness yet (so all these judgement emails being sent her way could well turn her against us before she does this study. I really wish people would consider this).
Let people sent her some nice emails thanking her that she is only accepting those who have a poor 2 day exercise test into this study rather then stoking impressions we just go around attacking researchers (which I think is unfortunately going to happen here) who may be trying hard to do the right thing.
Unfortuately a section of our community is causing new researchers to our field to leave our field. what about unless we know what a researcher is like (eg a known wessely theory schooler), giving them and their study the benefit of the doubt. Let's help guide studies by being positive towards new researchers or otherwise you may end up causing these researchers to dislike us and more likely the biased you were expecting.
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and before anyone thinks "this study is taking funding away from other ME/CFS studies.. As far as I know the ME/CFS researchers in Australia who apply for funding are getting their grants from somewhere or another. (all the ME/CFS research groups Im aware of here do currently have research studies on the go.. the group in Queenland, the Adelaide research group has study going, there is currently another ME/CFS study from universtity of Adelaide going on currently).
I havent heard any of them express that they cant do the study they want due to lack of funding here (sure they may have to fight to get funding but as far as I know these studies are all going ahead. Fortunately we have a couple of good groups doing fundraising for us including the Masons).
If anyone knows of a ME/CFS study here which isnt going ahead due to lack of funding, let me know..
I agree with you that PR is part of my social life as well. I dont discount this and feel it should be used as a form of human/internet interaction.
What I am saying is that of you can write responses like the one you just wrote to me than I would hope that people are actively engaging in writing emails and helping the comunity in a positive way.
By this I mean if there is a rediculouse study which this one is in my eyes....I hope people would stand up and say something to the foundations funding the research.
The Mason foundation though they funded the NK Study that just came out has just turned around and is now funding 2 studies:
- The study in the the thread
- The study from UNSW on a training video on how to guide payients through CBT/GET
@taniaaust1 do you really want a training video that is your mainstay for ME/CFS treatment?
Do they really need to study CBT and GET more when the IOM reviewied 9,000 articles and renamed the disease Systemic Exercion Intolerance Disease (SEID)?
Exercion in ME is Mental, Physical and motional stressors can be anyone of the 3.
What about the P2P, What about OMF that found something wrong in the Mitochondria, what CDC and NIH studies that both state are biological in nature and agree that putting people under stressors could result in worsening in condition?
They have found so much evidence that over exercion is what causes decline some it causes quick decline others it is more slowly and other relapse and remit from exersion...
Do they really need to study CBT and GET more, and subject more people to this kind of crap in the name of science its a joke....
There are many on this forum who likely performed a CPET and have never recovered from it.....its a risky test for a poorly defined disease overall....that being said it shows the problem quite simply our "Anerobic System/Mitochondria" are dysfunctional or damaged or dysregulated causing system wide malfunctioning of the body.
All I am saying is that no further research needs to be done on testing CBT/GET/and inducing PEM......Its a given the IOM Proved it.
If a study does not look at brain, blood, work, tissue samples, or examinations of the biology of the disease its pointless.....
We need to figure out what the mechanism of the disease is not waste money researching what we already know......
"Are efforts should be focused less on chatting on forums and more geared to advocacy with whatever energy we have..."
My comments as stated above maybe extreme....but I feel as though we, myself included could use this energy in a productive way in promoting what we know about our disease when which is clearly stated in the IOM report and if studies do not align with this report and our own personal experience I feel we should speak out.
My last point that if you read and find the forum post that highlights a Poll that the majority with this disease deteriorate over time in a way normal healthy peope do not.
Please dont take what I say ofensively I just dont share the same view.
I will also not email this researcher i get tired writing the emails....When I do it is in a factual, unconfrontational way explaining what I know about the disease, and how my life has been impacted by the disease....thats all....
and the bottom line is that its devasted my life...overexercion lead to a lower level of functioning and more problems biologically in my body because I tried to do an ounce of what I once was able to do.......
