Somebody might read that that autopsy research could have no benefit for people who are living.If the problem is not in the gut i believe the only thing left is: autopsy!
But of course, autopsy research can be done on other people who died.
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Somebody might read that that autopsy research could have no benefit for people who are living.If the problem is not in the gut i believe the only thing left is: autopsy!
jspotila - I'm hoping there might be a few (one or two or three) well-qualified advocates who will pick this up with Dr Lipkin in the next few days and produce a letter for people to write to their congress people. I don't want to load you down with stuff, even though you'd be a great candidate - but if you're not up for it, I'm hoping you might know people who are!
It would be nice to find out how it differs from deconditioning.
Hi, OSAfter quickly reading a transcript of the meeting, I think Dr.Lipkin might know what is causing disease, but didn't find proof. I can't help, but when you dismiss 85% of retrovirus found in the blood, you have to have a very good idea of what is going on. I think he has found somewhat of a blueprint of infection traces, perhaps a past infection(s)? Maybe that's the reason he wants to look at antibodies(past infection)? I think he can link this blueprint to typical behaviour of certain pathogen's, but didn't find the pathogen itself. Maybe in the gut?
It's just my interpretation. I find it striking that he minimizes the 85% retrovirus infection, and for doing that, he must have a very good alternative hypothesis. Other researchers might claim that a retrovirus is the causing agent in this very situation.
Best wishes,
OS.
I think this brings up an interesting topic. How much rest is required to bring a patient to a valid baseline? I wonder if Snell/Stevens have considered this. Any patients of theirs out there. I got the impression from Jennie she might have traveled to Stockton.
To oversimplify it, deconditioned people reproduce their numbers on day 2. So do cancer patients, MS patients, congestive heart failure patients, etc. All of those groups reproduce the amount of work they can do, their anaerobic threshold, etc. We are basically the only group that has been shown to substantially drop in function on day 2.
To oversimplify it, deconditioned people reproduce their numbers on day 2. So do cancer patients, MS patients, congestive heart failure patients, etc. All of those groups reproduce the amount of work they can do, their anaerobic threshold, etc. We are basically the only group that has been shown to substantially drop in function on day 2.
To oversimplify it, deconditioned people reproduce their numbers on day 2. So do cancer patients, MS patients, congestive heart failure patients, etc. All of those groups reproduce the amount of work they can do, their anaerobic threshold, etc. We are basically the only group that has been shown to substantially drop in function on day 2.
one thing i will say tho is we have official reports saying we suffer GREATER disability and far lower quality of life than even MS patients. sorry that i can't link to any atm. certainly we have video and audio of Peterson and Klimas saying this. the thing is we get WAAAAY less money than the MSers and we suffer way more (sorry we just do). and that's because they have 'biomarkers in MS like plaques on MRI, spinal tap etc and we do not. I keep going on abt this, it all goes back to being RECOGNISED.
And Lipkin is the person who can actually nail down the cause for us and legitimise CFS; don't we at least want the world to know we have a legit disease??!!!
In that way, couldn't this be considered a unique biomarker for ME/CFS? Leaving it out of the CDC-Unger study would be a travesty!
There are different levels of MS and there are different levels of CFS.
Also, a percentage with MS eventually die, in difficult circumstances. So probably ok to make this point here, but one would need to be careful outside of here as it might backfire.
A much smaller percentage than in MS.A % of mecfs patients also eventually die, in difficult circumstances, ie Sofi Mirza et al.
A comparison might be useful, but I just had some issues with how what I replied to, i.e. this post, was worded:Comparing our situation to MS is valid, IMO. I'm sometimes tempted to say that's what I have, to family and friends, just to skip the denigration, disbelief and lack of compassion shown to those who have mecfs instead of MS.
one thing i will say tho is we have official reports saying we suffer GREATER disability and far lower quality of life than even MS patients. sorry that i can't link to any atm. certainly we have video and audio of Peterson and Klimas saying this. the thing is we get WAAAAY less money than the MSers and we suffer way more (sorry we just do). and that's because they have 'biomarkers in MS like plaques on MRI, spinal tap etc and we do not. I keep going on abt this, it all goes back to being RECOGNISED.
And Lipkin is the person who can actually nail down the cause for us and legitimise CFS; don't we at least want the world to know we have a legit disease??!!!
How does a ONE day test, which was the test in question, show results that are different from deconditioning? Its clear a two day test can do so. Its not clear what the discriminating factors are in a one day test.
Sorry I can't be more help here, Alex. I'm working from foggy memories of what I was told years ago, but I'll share what (possibly inaccurate) shreds of memory I have.
I think it had to do with how quickly we reach our AT and maybe the amount of effort required to make us reach our AT. I imagine these are not established measures of exercise intolerance, but are distinct from the results experienced testers see with deconditioned patients. Both of my testers (at two different sites) said something to the effect of, "This is not what deconditioned looks like." That does not mean that insurance companies or disability offices would accept this data as evidence of disablity, just that it looks different from data of deconditioned people.
Just to be clear: I know the illness is serious. I've been severely affected for 19 years and know people more severely affected again. But I just think we need to be careful how we make comparisons with other conditions.
In other words this came from expert knowledge, and might not be published?