Sept 10: CDC 'conference call' including Unger and Lipkin

[Dolphin]

If the problem is not in the gut i believe the only thing left is: autopsy!

Somebody might read that that autopsy research could have no benefit for people who are living.

But of course, autopsy research can be done on other people who died.

 

[jspotila]

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!

Great idea for people to work with Dr. Lipkin to get his input re: funding. I would caution people against approaching Congress (or NIH for that matter) asking for funding for one researcher or one institution. The system doesn't work that way. And I think it would be ideal for the advocates working on the Hill and locally to coordinate their efforts somehow. I am completely crushed with other projects right now, but am happy to take a look at a draft letter or other communications to offer input.

 

[jspotila]

It would be nice to find out how it differs from deconditioning.

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.

 

[Daffodil]

After 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.

Hi, OS

i think they find some signs of retroviral activity in several diseases such as MS, Parkinsons, etc..but are never able to find a retrovirus. That leaves HERV, which could be in lymph tissue - 75% of which, is in the gut.

of course, maybe their equipment is not sensitive enough yet to detect certain low level pathogens..who knows.

i am confused as to why lipkin wants to test fecal samples and not gut biopsies first.

 

[jspotila]

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.

I had my testing done at Ithaca College by Dr. Betsy Keller. Ithaca is about a 4 to 5 hour drive from where I live. I can't drive anymore, so a family member took me up there. The next day I did Day 1 of the test. I did not feel rested going in, and used my wheelchair in order to save energy for the test itself. The following day was Day 2 of the test, and my "escort" drove us home after that test. I found it to be excruciating (for all my symptoms) and it took me 3 weeks to get back to baseline. It was worth every minute of hell.

I don't think that having the patient be well rested on day 1 is critical. The goal is to capture the drop in function on day 2. Although no one has published data on what a third test day would be, I suspect we would continue to drop in numbers every day we were tested until we were too sick to perform the test. Being in an all out crash on day 1 is not ideal, but being crashy (for lack of a better word) from travel may not skew results too badly. Day 1 is really an equalizer. The patient needs to be crashed on day 2. You ensure that through day 1.

 

[alex3619]

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.

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.

 

[Nielk]

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.

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!

 

[Purple]

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.

You have quoted cancer, MS, congestive heart failure. Just out of interest - are there any comparisons of the two day test with infectious diseases? Or better still - is there an easy-to-digest list of studies and their results of the two CPET test for various illnesses?

(just wondering if such a list would be a useful tool to have at hand...)

 

[Iquitos]

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??!!!

I agree. I have a cousin who has MS. She gets a diagnosis and is recognized as a patient with a bona fide illness -- both by my family and by the society at large, including the insurance industry, doctors and researchers.

Her husband's insurance pays 80% of the drug that costs $4000 per month, in hopes it will slow progression.

Her quality of life, simply speaking of the physical, is much better than mine. The other aspects of quality of life that involve respect vs denigration, diagnosis vs being ignored, continuing research interest and FUNDING vs our pathetic beggarly situation, her quality of life is so much better than mine that words cannot describe it.

I'm not advocating taking research money from MS. I'd simply like to have parity. Hay fever gets 40% more research $$ than mecfs. That's outrageous!

 

[alex3619]

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!

It is very probable this is a unique biomarker, and its already being discussed in those terms, but it takes time to do the science to demonstrate it robustly.

 

[Iquitos]

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 % of mecfs patients also eventually die, in difficult circumstances, ie Sofi Mirza et al. All diseases eventually end in death, but I know of only one that currently requires the patient to be sick for at least 6 months before they can even get a DIAGNOSIS, let alone societal support or medical support.

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.

 

[Dolphin]

A % of mecfs patients also eventually die, in difficult circumstances, ie Sofi Mirza et al.

A much smaller percentage than in MS.

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.

A comparison might be useful, but I just had some issues with how what I replied to, i.e. this post, was worded:

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??!!!

 

[SOC]

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.

 

[Nielk]

We are all dying. Every day we are getting. Loser to death. It's how we are living our lives that matters. IMO
Just by definition, we have lost a minimum of 50% of our previous capacity. I do t think that's the case with most illnesses.

 

[Dolphin]

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.

 

[alex3619]

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.

In other words this came from expert knowledge, and might not be published?

 

[alex3619]

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.

Yes Dolphin . This is a topic that could really do with a few advocates doing a little research and posting an article, with references.

 

[SOC]

In other words this came from expert knowledge, and might not be published?

I'm afraid that's the size of it. Somebody would need funding and a publisher. It's probably not a big priority with anyone yet.

 

[Nielk]

No question there are other very serious illnesses. They are mostly recognized as such and taken seriously.

 

[SOC]

Am I correct that Dr Lipkin said (or implied) that they have found no single pathogen in ME/CFS patients? Did he say anything about whether we have more infections than the healthy controls? In other words, is he finding no substantial difference in infection status between PWME and healthy controls, or is he simply finding no single pathogen that could be considered causative?