Never heard of it, but it would make sense given how different people respond to different treatments and recover at different rates.

I never heard of 7 subgroups before. I noticed that the outcome of treatment was supposedly different for each group. When I was diagnosed with NMH and POTS along with CFS, I was told that, in my case, the CFS was caused by NMH and POTS. So, it hit me at that time that CFS could be caused by different things in different cases. Thanks for bringing this up, Jack.

Then there's this one that's not nearly so stingy with data from 2010, listing *Eight* genomic subtypes:

Microbial infections in eight genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921262/

I happened to read this article in the onboard magazine when I went to SC -- why aren't we doing this?

Patient Uprising -- With technology as a tool, more people are taking the lead when it comes to their own health care
http://magazines.aa.com/content/patient-uprising

Wow, what a dope I am... the fourth paragraph of the Phoenix Rising article Richie referred to elsewhere (Thank you, Richie) tells of the OMF doing exactly what I whined about above:

"A new research consortium was recently launched by the Open Medicine Foundation (OMF) supported by several of the worlds top scientific minds. Under the guidance of world-renowned geneticist Ronald W. Davis, PhD, the End ME/CFS Project is a movement aimed at blasting ME/CFS research into the mainstream. Its stated goal is to understand the disease at a molecular level, finding diagnostic markers, effective treatments, cure and prevention. "

They aim to do this by "supporting cutting edge research, creating global collaboration, engaging patients in research and informing patient communities."

They're at http://www.openmedicinefoundation.org/the-end-mecfs-project/, umbrella org at http://www.openmedicinefoundation.org/

I withdraw my whine.

This doesn't surprise me at all. Way back after I was first diagnosed, in the days when only the real tech nerds had the internet (ie nearly 30 years ago), a friend of my sister looked up CFS online for me. I don't know what ever happened to the printouts he gave me (I wish I still had them), but I distinctly remember one which plotted the symptoms on a graph. There were six distinct clusters of symptoms.

Since I was already discovering that treatments which had worked for others definitely didn't work for me (and often made things much worse), I concluded that there were actually 6 different conditions which presented similarly.

This conclusion was supported by a doctor who informed me that "syndrome" basically means "we don't know what causes it or how to treat it". And my chiropractor who told me how the same thing had happened with polio - that is, several different conditions were assumed to be the same thing and lumped into the polio basket, but later research identified them and separated them out.

Since then fibromyalgia has been identified and taken out of the CFS 'basket'.

I'm very interested in reading the articles mentioned in this discussion, but not up to it at the moment, so I've saved the pages to look at when I'm a bit better.

Thanks for posting all these articles, everyone. I see a lot of us needing to read in small chunks or even put off til later 'cause it's too heavy to read right now.

Now if all these researchers would just take up Alan Alda's Plain Language initiative so we could easily understand the progress they are making without struggling so much.
http://www.huffingtonpost.com/2013/05/03/alan-alda-scientists-jargon_n_3207738.html

That one's new to me to, jcp -- thanks!

dammit.... *too

My daughter is a librarian. Asking her if she can get the full article. If so I will post it. Interesting stuff. The ncbi article is something I would have been eager to read when I was younger and less sick but now it just seems too much. So frustrating.
I'm all for plain language!

The founder of Open Medicine Foundation is Dr. Kolgelnik whose office is about 45 minutes from me. I always meant to make an appointment with him but haven't yet. I get their emails though asking for money.

I hope this group does what they say they will do, I think they've only just started.

This idea that ME/CFS is a collection of separate illnesses has been rattling around the research community for a long time.

Personally I don't buy it, but I try to keep an open mind on these things. As Commander Spock always used to say on Star Trek..."There is insufficient data to form a conclusion on this question."

Chronic illnesses change during their evolution in a patient. Trying to separate these clinical presentations into separate illnesses seems pointless if you aren't tracking things over time. Do we go from type 2 to type seven to type three or whatever? It sounds to me like an excuse to get grant money, a study that proves nothing and generates a paper that sounds significant.

They say lupus is different in each patient who has it...so why should ME/CFS be uniform? All the chronic illnesses seem to have different manifestations in different patients at different times in their history. I don't think it means anything at all.

But like I said, I don't have a firm opinion on this...insufficient data. Science moves in many directions in search of truth. Logic tells us that most of those forays into the unknown will be blind alleys...there's only one truth. In the history of science, many of the greatest discoveries were made while looking for something else entirely...so who knows what will happen in future research?

At least now a lot of very bright people are trying very hard to find answers. That's new. We're not in the back of some dusty closet anymore.

" At least now a lot of very bright people are trying very hard to find answers. That's new. We're not in the back of some dusty closet anymore."

Indeed Richie, that's what I find most encouraging *MAYYYBE* something useful will come of it.