I think a letter like this to Elizabeth Unger has value, however I have the following concerns:
1.) Who are the board members of PR? Where is information about them available on the PR website?
2.) You need to explicitly state that this reflects the opinion of the
board members of PR. Phoenix Rising itself has become a 1000+ strong community and there is nothing to indicate that this letter reflects the views of the community.
3.) Why encourage the use of "ME/CFS?" My understanding -- and why I supported it -- was that it was meant to be a
transitional name only. If there is any organization that can transition us from the universally despised "CFS" to something far more appropriate, it is CDC. To borrow your own phrasing, CDC should "utilize the expertise of the ME/CFS research communty to" find/decide upon a new name that better reflects our best understanding of the pathology of this illness. And not just the CDC's current understanding, but the scientific consensus as a whole. And yes, pointing out that they have done precious little to move us toward a scientific consensus, that the fact we are more than a quarter of a century into this disease without any real scientific consensus, seems entirely appropriate.
4.) SUBGROUP! SUBGROUP! SUBGROUP! If I was allowed to ask Unger or even Reeves only one question, it would be why the hell it has not subgrouped this illness when even its own scientists and research have insisted this is absolutely key to understanding this disease (e.g. Fukuda et. al). I realize you talk about subgroups here and there but this really among the most important - and quite possibly among the simplest - things they could have done/should be doing and haven't/aren't. How do we know that outbreaks are sporadic? They may well be but without subgrouping (and doing other basic epidemiological work) we can't know for sure. The refusal of the CFS group at the CDC to do this one basic thing, along with its financial improprieties, is nothing short of malfeasance - though I can appreciate why you might refrain from using that last bit of phrasing.

However, subgrouping should be it's among it's top priorities.
5.) For the love of God, Buddha, Jesus, Mohammad and all that is caring and compassionate, CHANGE/TAKE DOWN THAT DAMN TREATMENT SECTION on their website (I believe it's separate from the toolkit, but if I start looking stuff up, I'll be here for the next five hours). While professional counseling has its place in helping patients cope and learn to pace, listing it as the number one treatment option is insulting in the extreme as -- whether intentionally or not (though my money is on the intentional) -- it tells anybody who visits that page that ME/CFS is an illness of psychogenic origin. There is no real scientific consensus on how to treat ME/CFS -- I get that. However there is a fairly standard protocol on how to treat symptoms. And everybody outside of the CDC (okay, and NICE, etc.) recognizes that certain SUBGROUPS do respond to certain medications. The day of "well it doesn't help/define everybody" has got to end.
6.) I think the NIH is -- for the moment -- doing a good job of leading and if Dennis Madigan continues as he is, I'm happy to see them continue to lead as opposed to CDC, who, by the nature of their organizational mandate, is going to be limited in its ability to lead if ME/CFS turns out not to be communicable.
7.) I understand differences of opinions - we all have our own unique take on the world - but while this letter does have its strengths (I think concerns about the state of ME/CFS "evidence-based medicine," for instance, are well-founded),
I don't see why you couldn't just sign the PANDORA letter and follow it up with an addendum clarifying your position(s). My initial gut reaction when I read this letter with its bit at the end about PANDORA's letter was that it was petty. Or at the very least, it was undiplomatic to refuse to sign it and then send your own that points out its flaws. It felt like you were splitting hairs amidst so much upon which you actually agree (yes, I do see the irony in my whining about that while pointing out the - subtle - flaws I see in the letter you've just posted

!).
I think PANDORA's intransigence about its inability to make any changes to its letter was unfortunate, and I totally get your discomfort with some of its language. Yet at a time when there is so much division in our community, so much back-biting, so much hair splitting about every little bit of language (not that there isn't a time and place for that) that it just seems stating "oh right, addendum - study outbreaks, comparing it with the information we already have - and will continue to get - on gradual onset ME/CFS and physician ed programs should be put together by practicing clinicians, include evidence from all sources, and where evidence is lacking but shows merit for better diagnosing and treating ME/CFS, fund studies to clarify it" would have been far easier, shown more tact, and saved what is sure to be yet another round of this organization snubbed that.
Sorry, this is just the first time I've felt well enough to vent about anything ME/CFS related in awhile - and again, irony with regard to my last comment already noted.