Jennie Spotila Suggests CDC CFS Program Should Be Dropped - What do you think?

[Cort]

Jennie argues that funding for the CDC's CFS program ($5.4 million) should be ended.

• http://www.occupycfs.com/2015/08/04/no-cdc-funding-for-cfs/

I think it's a horrible idea for several reasons including the huge multisite ME/CFS expert study that's going on right now, the research they're doing on NK cells, immune problems, gynecological issues, genetics, exercise (cognition, lactate and gene expression) and other reasons I listed in my rather numerous comments on the blog ..

But others have other ideas. Looking at the blog and the comments kind of leads you to a summary of the pro
s and con's of the CDC's CFS program.

 

[JennyJenny]

I do know this, getting stuck on a name and wanting it changed is doing little good to get it out of women's health at the NIH. Tell the stories of people who are men, adolescent and child boys and you can start getting the point across.

You can house it somewhere else without having a name change or proving it is inflammation of the brain and spinal cord.

Too much effort from the advocates is being put on the name ME and we are getting NO WHERE doing that. Work on getting the NIH to move the illness out of women's health by proving with male patients it is not a female disease.

 

[weyland]

@JennyJenny if you think it's about the name then you've missed the point. The name is immaterial, it's the historical entity that the name describes that we care about. What real ME advocates are calling for is for the disease ME to be studied. We do not want CFS renamed to ME, we do not want "ME/CFS" studied as if they are the same thing. We want the disease historically known as ME to be studied on its own, not conflated with CFS.

 

[JennyJenny]

@JennyJenny if you think it's about the name then you've missed the point. The name is immaterial, it's the historical entity that the name describes that we care about. What real ME advocates are calling for is for the disease ME to be studied. We do not want CFS renamed to ME, we do not want "ME/CFS" studied as if they are the same thing. We want the disease historically known as ME to be studied on its own, not conflated with CFS.

Well that isn't going to happen. And all the ME docs and many of the ME advocacy sites and private studies are supported by CFS diagnosed patient money because we know it is the same illness but a differing severity and many people with CFS have eventually been diagnosed with ME. It is like breast cancer. 10 different types of breast cancer with different causation and approaches to them but they are all still breast cancer. And THAT is how you get research done. Any of these breast cancers on their own could never raise the funding it needs but together they are a force to be reckoned with.

ME and CFS are hitting the same Citokyne markers. They may have different causation and will need different approaches but only if they come together as a force to be reckoned with will studies continue. Without the voices and numbers of CFS patients, ME patients won't be studied. And you need our money and this is very much understood by Drs. Klimas, Hornig, Lipkin and Montoya. Dr. Klimas including GWI in her repertoire of research is brilliant. Her getting the $800,000 grant from the NIH probably allowed Nova Southeastern to give her money from their own coffers to begin further research on CFS; rewarding her for her ability to get funding for GWI. I can't be sure of that but that is my theory. And it is her theory that GWI is also related to ME/CFS, another brilliant realization on her part because she sees the same symptoms and through her research she may be able to prove one day that the same Citokynes are raging or damaged and the same fMRI's show inflammation of the brain. Differing causation can still lead to the Umbrella of ME/CFS.

And THAT is how you get research done. And if none of them have any relation, THAT is how you prove it.

 

[Cort]

I agree the name is a problem but is not the problem - not by a long shot.

We have to get it out of ORWH - no money there! But that means we have to find an Institute that wants us.....If it's not one thing it's another....

I do know this, getting stuck on a name and wanting it changed is doing little good to get it out of women's health at the NIH. Tell the stories of people who are men, adolescent and child boys and you can start getting the point across.

You can house it somewhere else without having a name change or proving it is inflammation of the brain and spinal cord.

Too much effort from the advocates is being put on the name ME and we are getting NO WHERE doing that. Work on getting the NIH to move the illness out of women's health by proving with male patients it is not a female disease.

 

[Cort]

I agree the name is a problem but is not the problem - not by a long shot.

We have to get it out of ORWH - no money there! But that means we have to find an Institute that wants us.....If it's not one thing it's another....

Dr. Peterson, by the way, said he always used men patients in his presentations to show people it was not just a woman's disease.

 

[JennyJenny]

Dr. Peterson, by the way, said he always used men patients in his presentations to show people it was not just a woman's disease.

That was smart.

 

[Cort]

Well that isn't going to happen. And all the ME docs and many of the ME advocacy sites and private studies are supported by CFS diagnosed patient money because we know it is the same illness but a differing severity and many people with CFS have eventually been diagnosed with ME. It is like breast cancer. 10 different types of breast cancer with different causation and approaches to them but they are all still breast cancer. And THAT is how you get research done. Any of these breast cancers on their own could never raise the funding it needs but together they are a force to be reckoned with.

ME and CFS are hitting the same Citokyne markers. They may have different causation and will need different approaches but only if they come together as a force to be reckoned with will studies continue. Without the voices and numbers of CFS patients, ME patients won't be studied. And you need our money and this is very much understood by Drs. Klimas, Hornig, Lipkin and Montoya. Dr. Klimas including GWI in her repertoire of research is brilliant. Her getting the $800,000 grant from the NIH probably allowed Nova Southeastern to give her money from their own coffers to begin further research on CFS; rewarding her for her ability to get funding for GWI. I can't be sure of that but that is my theory. And it is her theory that GWI is also related to ME/CFS, another brilliant realization on her part because she sees the same symptoms and through her research she may be able to prove one day that the same Citokynes are raging or damaged and the same fMRI's show inflammation of the brain. Differing causation can still lead to the Umbrella of ME/CFS.

And THAT is how you get research done. And if none of them have any relation, THAT is how you prove it.

She is the only one doing that that I know. It works to be creative.

 

[weyland]

Well that isn't going to happen.

Don't be so sure. More and more research is starting to use CCC/ICC for patient selection. These aren't CFS criteria, they are ME criteria.

because we know it is the same illness but a differing severity and many people with CFS have eventually been diagnosed with ME.

No, we don't know that. There is no research to prove that at this time. Just because they share some overlapping symptoms doesn't mean they are the same or are a spectrum of the same disease. The IOM report states outright that they are different. What we know for sure is that ME and CFS criteria select a different group of patients with different symptoms, see Lenny Jason and Michael Maes' work.

Doing research on ME and CFS groups together doesn't help either set of patients. Statistically significant findings are difficult to extract from heterogeneous groups of patients. They're even difficult to extract from what should be homogeneous groups. Look at the recent Hornig/Lipkin cytokine work. They drilled down pretty far (Fukuda and CCC and viral onset) and couldn't show anything. Once they drilled down even further (duration of illness) they found something. This is what research on this disease needs to look like. Strict inclusion criteria, symptom clusters, onset type, duration of illness. These things and more matter if we want to get useful results.

 

[JennyJenny]

No, we don't know that.

Then separate from us. I can't even bother reading the rest of your post. But when CFS is studied alone as it often is and when CFS gets on NPR which it will, go on your ME way. Too bad that we are being studied and had open arms for all of you and many of you pushed us away.

 

[weyland]

But when CFS is studied alone as it often is and when CFS gets on NPR which it will, go on your ME way.

That's fine. The last thing I want is for ME to be mentioned alongside CFS on the radio so that it can enjoy the same ridicule that CFS will always get from the public. Did you look at the RFI for that radio spot? No mention of even SEID anywhere. I'm not really sure the outcome of this campaign is going to be positive if the CDC refuses to acknowledge the world experts or IOM's recommendations to drop CFS entirely.

Too bad that we are being studied and had open arms for all of you and many of you pushed us away.

The CDC has always kept ME and CFS separate. When they were working on the ICD-10-CM, advocates tried very hard to convince the CDC to push CFS into the ME G93.3 code, or at least into a subcode in the G (neurological) section. The CDC flat out refused. In 2011 the world experts signed a consensus document that recommended dropping CFS in favor of ME with a more stringent criteria. It remains to be seen if the IOM criteria selects something closer to CCC/ICC ME or Fukuda CFS. The point is that I'm not sure how much longer the CDC version of "CFS" is going to be studied.

 

[JennyJenny]

Jennie argues that funding for the CDC's CFS program ($5.4 million) should be ended.

• http://www.occupycfs.com/2015/08/04/no-cdc-funding-for-cfs/

View attachment 586 I think it's a horrible idea for several reasons including the huge multisite ME/CFS expert study that's going on right now, the research they're doing on NK cells, immune problems, gynecological issues, genetics, exercise (cognition, lactate and gene expression) and other reasons I listed in my rather numerous comments on the blog ..

But others have other ideas. Looking at the blog and the comments kind of leads you to a summary of the pro
s and con's of the CDC's CFS program.

She got what she wanted. She ran circles around the other advocates, researchers and patients.

 

[Cort]

Don't be so sure. More and more research is starting to use CCC/ICC for patient selection. These aren't CFS criteria, they are ME criteria.


No, we don't know that. There is no research to prove that at this time. Just because they share some overlapping symptoms doesn't mean they are the same or are a spectrum of the same disease. The IOM report states outright that they are different. What we know for sure is that ME and CFS criteria select a different group of patients with different symptoms, see Lenny Jason and Michael Maes' work.

Doing research on ME and CFS groups together doesn't help either set of patients. Statistically significant findings are difficult to extract from heterogeneous groups of patients. They're even difficult to extract from what should be homogeneous groups. Look at the recent Hornig/Lipkin cytokine work. They drilled down pretty far (Fukuda and CCC and viral onset) and couldn't show anything. Once they drilled down even further (duration of illness) they found something. This is what research on this disease needs to look like. Strict inclusion criteria, symptom clusters, onset type, duration of illness. These things and more matter if we want to get useful results.

I think we're going to get strict inclusion criteria soon! And the CDC and everyone will follow them....