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

currer

Senior Member
Messages
1,409
Interesting about the 85% retrovirus find! I hope they will look into the possibility of reactivated endogenous retroviruses.

This is interesting because (relying on memory here) didn't Dr Mikovits find the same percentage (85%) to have a retrovirus when she began her investigations?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
This is interesting because (relying on memory here) didn't Dr Mikovits find the same percentage (85%) to have a retrovirus when she began her investigations?
Arent they suppose to be just suppose to be benign retroviruses found in everyone. Was that 85 % in the me group or both groups?
 

Tuha

Senior Member
Messages
638
I am also disappointed that they will do only 1 day test. I think that the majority of the patients who would be able to do 1 day test they would be able to do also 2 days. The sickest patients will not be able to do 1 day test. So this is not a good "excuse" for not doing 2 days test. I think we should keep advocating for 2 days test.

Also we are listening all the time from NIH that for CFS there is enough money but there are not enough good applications. So now is the time to confront NIH with these words and ask to fund Lipkin studies. It was already mentioned - i would also like to see our advocates to prepare a letter with Lipkin´s cooperration to ask moey from federal agencies and then we will attack them with the letters
 

SOC

Senior Member
Messages
7,849
This still leaves room for them CDC and insurance companies to say we are deconditioned. Especially if they do not do blood tests afterwards .

Without a doubt. That doesn't mean they'd be correct, just that they don't care to understand the results of the test. The 2-day test gives much more obvious, and currently understood, results. It's also too damaging, for just that reason, for the most severely ill among us.

I'd do the 2-day test right now (for research) because I think it gives the best information. I'm also reasonably confident I could recover in a few weeks. I would discourage my daughter from doing it, though, because she's currently fully functional and in graduate school. I wouldn't want her to risk all that on a test to destruction. She can't afford to crash at this point in her life.

So, while I agree the 2-day test is best and is the one to use to confirm clear major dysfunction in ME/CFS, I also wonder what the sample set is going to look like if the nature of the testing automatically precludes the most seriously ill and those managing to work who can't risk the possible major crash from participating.

It's a difficult situation. My hope is that 2-day testing done on people like myself who are in a position to risk a crash will provide other less destructive testing. With luck, it will be something that shows up in blood tests. If we need do exercise to get the evidence to show up, let's hope the exercise will be minimal such as Connie's test, so that we don't have to damage people to prove they have ME/CFS.

In the meantime, 2-day testing is the best we have and should be used for research that seeks to determine the nature of our exercise intolerance and PENE.
 

waiting

Senior Member
Messages
463
We should do a poll here on PR asking the hypothetical question: if you were a patient in the CDC study, would you be prepared to repeat the CPET a second day for the PEM and metabolic data that only the second day would provide?
 

Nielk

Senior Member
Messages
6,970
Maybe if we can get a list of patients willing to undergo the two day testing and send it to Unger, it might help. This can benefit the patients too because they could use the results to prove disability. Steve Kraftchick, at the CFCAC meeting said he sends his clie ts for the two day testing all the time.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Maybe if we can get a list of patients willing to undergo the two day testing and send it to Unger, it might help. This can benefit the patients too because they could use the results to prove disability. Steve Kraftchick, at the CFCAC meeting said he sends his clie ts for the two day testing all the time.

I think that's an excellent idea, Nielk.
Perhaps it would be best if they were patients of the medical centres that are involved in the CDC's study?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
We should do a poll here on PR asking the hypothetical question: if you were a patient in the CDC study, would you be prepared to repeat the CPET a second day for the PEM and metabolic data that only the second day would provide?

Yes ... and I am a moderate patient, or severe using ICC criteria. For a research outcome its a good risk-reward ratio. As a measure in bedbound patients, for insurance or other uses, its impossible.

When you have a test that is currently the closest we have to a highly discriminating diagnostic test, refusing to use it is tantamount to using obsolete science.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Note that although Unger is performing a one-day CPET test, she is then performing cognitive and fatigue scale tests over the next 48 hours. This appears to be the main reason why Dr Snell says the CDC's testing has some merit.
See Jennie's blog for details:
http://www.occupycfs.com/2013/09/10/opportunity-lost/

Dr Snell also seems to indicate the the CDC has not ruled out two day testing. On Jennie's blog, Dr Snell is quoted as saying (my emphasis): "... I am disappointed that the study does nothing to validate the diagnostic value of repeated CPET testing for ME/CFS. It was briefly mentioned that this might be part of subsequent studies."

So perhaps a bit of friendly and constructive encouragement might go a long way. Beth Unger seems to be listening and engaging, but getting there slowly.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Arent they suppose to be just suppose to be benign retroviruses found in everyone.

Everyone has an enormous number of human endogenous retroviruses (HERVs). These are in the form of DNA code only, as an integral part of human DNA, and they are not active viruses. They are ancient viruses which managed to integrate into our DNA. On the whole they are considered benign and harmless, and even an essential and beneficial part of our DNA.
However, there has been some research suggesting that endogenous retroviruses can become partially reactivated, and can create retroviral particles, which, it is hypothesised, might cause some diseases. (e.g. I think that reactivated endogenous retroviral particles have been associated with schizophrenia and MS.)
Huber was looking into endogenous reactivation for ME, but her latest study failed to find any significant activity.
It is thought that reactivated endogenous retroviral particles may be detected in the blood.
I haven't read much of this type of research in depth, but I'm pretty sure that the existing research is exploratory and not very conclusive.

Was that 85 % in the me group or both groups?
No one seems to know the details.
 

waiting

Senior Member
Messages
463
And if we did a poll here, a second, follow-up question could be: "if you would NOT be prepared to do the 2nd day, please list your concerns."

It would be interesting to see the results ... and it might be interesting for the CDC to see them, too, no matter what they are. And maybe there would be ways to include 2 subsets -- those who do only Day 1 and those who do both days.
 

Legendrew

Senior Member
Messages
541
Location
UK
Everyone has an enormous number of endogenous retroviruses. These are in the form of DNA code only, as an integral part of human DNA, and they are not active viruses. They are ancient viruses which managed to integrate into our DNA. On the whole they are considered benign and harmless, and even an essential and beneficial part of our DNA.
However, there has been some research suggesting that endogenous retroviruses can become reactivated, and can create retroviral particles, which, it is hypothesised, might cause some diseases.
Huber was looking into endogenous reactivation for ME, but her latest study failed to find any activity.


No one seems to know the details.


I think a better question is why ME patients suddenly appear to start responding to things such as this, that are otherwise inert in controls. To me this speaks of an underlying pathology and something of a blind alley in chasing these but as with most of these things it takes further research to conclude that.
 

Kati

Patient in training
Messages
5,497
I think that our biggest issue is the difference between day one and day two. On day two, ours seems to dip really low compared to controls and there is no other way to show this but, to take the test on the second day.

There is no excuse for totally eliminating this two day testing from the CDC study. Who else is better equipped to study this than CDC?? Even if it is on a small group of patients who are able/willing to take part. Dr. Snell was able to pull together tests subjects. How much does it cost to put up 50 patients in a hotel overnight?

i don't think there is any plans to cover people's hotels in order to perform an exercise test. I would and will fly 2hours over in order to do that test. I would do a 2 days even though the last time I did it I felt like I was run over by a truck after day 1.

Fatigue scale after the test is not good enough to tell whether we are deconditioned or suffer from PEM. It is patient perception, more or less. Nothing measurable or scientific.
 

Iquitos

Senior Member
Messages
513
Location
Colorado
Yes I was excited when i heard him compare us to the aids era too, but right away felt depressed bc frankly the reason aids activism worked was because a) even aids patients had more energy than us to rally together and pressure the gov, and b) aids patients were *dying* of HIV. QUICKLY. I know there're ppl here who've countered me and said PWCs were also dying of ME, but we MUST face that we have a MUCH harder task because we're not dropping like flies SPECIFICALLY like aids patients were. Harsh truth.

Yes, but this is why we need to emphasize the huge scientific puzzle AIDS was then -- as is mecfs NOW.

We need to emphasize how Congress and the federal health beauracracies, including CDC, stepped up to the plate and slathered money on anyone thought to have any ideas of how to deal with the scientific problem -- THEN, and how they need to do the same NOW.

Quotes from Klimas about how she'd rather have AIDS than mecfs should figure prominently and her reason why: that AIDS patients get diagnoses and treatment and social support instead of being either denigrated or ignored, as we are.

AIDS still gets a lot of research money. It's time to CHANGE THE PRIORITIES, if only because of the economic cost to the governments that are not getting our income tax monies because we can't work.

What we DO have now is electronic communication and that can make up for some of our lack of energy, in comparison to AIDS activists. What we don't have is the kind of support from friends and family that AIDS patients had. I don't know what we can do about that, except keep trying to make CDC and the media stop treating us badly -- and that has improved a little in the last couple of years.
 

Kati

Patient in training
Messages
5,497
Sequestration is a big puzzle to me.

If you look at the funding by disease table, http://report.nih.gov/categorical_spending.aspx many categories see their budjet increase by a few millions, including cancer, asthma, complimentary and alternative medicine (OMG 487 millions), digestive diseases, epilepsy, estrogen, genetics and genetic testing, coronary heart disease, HIV/AIDS (increase by 27 millions from 2013 to 2014!!!). And i stopped at HIV which is not quite in the middle of the page.

The fact remains that there is so much stigma surrounding ME/CFS that HHS does not think we are worthy of more than 5millions.