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CFIDS Association & advocacy


Phoenix Rising Founder
CFIDS Associations Drops Old Lobbyist Picks Up Another One

The CAA and the Sheridan Group have almost been tied at the hip for probably 20 years now but the CFIDS Association just dropped them in favor of the B&D Consulting group. This can only have been something of a wrenching move but then again it seems like it's past time for a change with little visible being done on the federal level until the CDC problems hit the fan this year.

I can only think that Suzanne Vernon has something to do with this - the article noted that need to merge research and public policy. This is a big move for the CFIDS Association but one that generated little heat from the community. My requests for a short interview appear to have been ignored (unfortunately). I think (hope) its a good one.



Decennial ME/CFS patient
Portland, OR
Does the CAA have their own PR person, or do they rely on the lobby firm to do PR?

I ask this because, while I think the CAA has been just brilliant at seeding some phenomenal research, they are absolutely abysmal at PR. The letters they wanted us to mail to media outlets on "Lobby Day" this last May were embarrassing. My boyfriend is a journalist (alas, he doesn't write about anything remotely close to health issues) and he was shocked at just how bad their PR people are.

This is a bit of a tangent, and I keep meaning to write a post about how to deal with the media, but my one bit of advice to people when you see a story about ME/CFS, is try to call the person who wrote the story. Letters to the Editor are only read by the person who puts the "letters" page together. Neither the writer nor the editor read them, unless they happen to get hundreds and hundreds of them.

Hope the new lobbyists pay off.


Phoenix Rising Founder
Hilary Johnson whacks Kim McCleary

On her latest blog Hilary Johnson - the author of Osler's Web - took a two by four to Kim McCleary stating that she makes her 'skin crawl'. :eek:


Here's the text for those that are interested:

A final digression while I’m on this subject: Does it make your skin crawl, like it makes my skin crawl, to think of Kim McCleary speaking on behalf of people who are sick with this appalling disease to members of Congress? Or to the press? Or cutting deals with CDC on behalf of patients? Here’s an idea: Kim Must Go. Put that on a T-shirt or a coffee mug. She doesn’t get to explain. I don’t care what her explanation is. All Kim gets is the sound of the door slamming behind her.

I know—with so much betrayal going on--by our friends and families, by our government, by our medical establishment—it’s almost more than one can bear to acknowledge our betrayal by a very rich organization whose extremely well-compensated director has for twenty-two years claimed to represent patients but has instead represented the U. S. government in its pogrom against patients. For the moment, on this incredibly painful issue, let’s simply try to remember that what doesn’t kill us makes us stronger. I know there will be no group hugs after such a desolate declaration of What I Really Think.

I know that people have different opinions about the CFIDS Association but this was too much for me - I'm going to have a response on my blog.


Phoenix Rising Founder
This is a subject that can get a little intense. I do hold a different opinion on it. I really got active in advocacy issues only in the last five years. I know there are a lot of negative feelings towards the CFIDS Association but I don't really know why. I would love to hear what specifically perturbs you about her or them. I think it is an important discussion to have if you're interested.:)


Senior Member
Ashland, Oregon
Cort - Scathing Prose

Hi Cort,

I read once where a person referred to Hillary Johnson's writing style as one of "scathing prose". I got a good chuckle out of that description, as Hillary certainly does seem to have a talent along those lines.

But... there's always a danger in utilizing a style like that. In her book Osler's Web, I think often used her "talent" appropriately. But the danger when writing like this is knowing when you're crossing a line.

Even though I don't know anything about the issues she's addressing, my first reaction was to pause and wonder whether her comments about Kim McCleary are well placed. She may have some legitimate grievances, but things of this nature are seldom as black and white as her "prose" would seem to have us believe.

I would follow any discussion you might have on the CFIDS Association with much interest. I used to be a member for many years, and generally found their publications to be of interest. I never did feel I had the energy for any kind of advocacy however.

Best, Wayne


Phoenix Rising Founder

Here was my retort to Hilary's comment. The gloves came off that's for sure.

Headhunter On the Prowl
by CORT on AUGUST 11, 2009

Hachet Woman - Hilary Johnson is doing what she does so well-shes taking heads. Shes never been about support, she was an investigative journalist after all. Her metier has always been holding up a bogeyman and then cutting its head off.

Born with a golden pen her darting, evocative and often voluptuous prose engulfed a community that raged at the pitiful federal response. Oslers Web was a tour de force of investigative reporting, a remarkable achievement for anyone, let alone someone with a severe case of ME/CFS. Yes, she had her white hats and her black hats, the good guys and the bad guys even back then; there was never anything subtle about her world view but she told a great story and it fit with many peoples experiences.

Real Speak. And shes still swinging her hatchet. But is she swinging it too freely? Has she lost her head? I would suggest that anyone who calls the CFIDs Association the Bechtel of CFS and suggests that they are contributing to a pogrom of the ME/CFS community has gone over the bend. Theres a difference between constructive criticism and an almost hysterical attack. Despite her declaration that it was time for Real Speak Hilary Johnsons recent blog reeked of the later.

In a remarkably ugly statement she stated that it makes her skin crawl to think of Kim McCleary representing ME/CFS patients before Congress. Alot of things make my skin crawl but this is not one of them. Kim McCleary is married to a man whose mother has had ME/CFS for over 20 years. Ive watched Kim McCleary choke up in the middle of a conversation over the frustration at her inability to change the status quo at the CDC. Ive seen her, overwhelmed with emotion, have to pause in the middle of her sentence as she testified before Congress. I read her cutting testimony as she took the federal government to task before that little committee.

The Enablers: Who are her fellow CDC enablers? Who regularly sits down with her to plan their next ME/CFS pogrom? Check out some of the ME/CFS Nazis who make up the board of the CFIDS Association of America.

  • Jennifer Spotila - former attorney, disabled, ME/CFS for 15 years
  • Katrina Berne, author Of Running on Empty, ME/CFS for 15 years, disabled for eight years
  • Amy Divine - ME/CFS for 23 years
  • Lynn Royster - mother of a son with ME/CFS for over 20 years
  • Brian Smith - ME/CFS for 14 years
  • Amy Squires - sister with ME/CFS
  • Patrick Venetucci - family member with ME/CFS 10 year
  • Adam Lesser - ME/CFS for 6 years
  • Bruce Allhouse - daughter with ME/CFS

Somehow I dont think these people are interested in eviscerating the ME/CFS community. But maybe Kim has managed to collect a group of CDC groupies. What did they have to say recently about our most infamous CFS research program?

Jennie Spotila (CFIDs Association Board Member)

if CDC does not address its systemic problems then the five year program will not be worth the paper its written on ..the CFS program is falling behind and failing in its mission. Until the program is reinvigorated by accountability and purpose you will be a barrier to success instead of being part of it.

Dr. Katrina Berne (CFIDs Association Board Member)

In her testimony, Dr. Katrina Berne called the calling the CDCs spending practices wanton, their lack of progress dismal, stated that they do not take the disease seriously and called their approach slipshod. She ended up stating that she has little to be optimistic about the next five years given their past performance. As someone whos been ill for 25 years shes deeply angered by the agencies lack of progress stating that The history of the CDC in regard to CFS has been dismal.

I cannot imagine that any of them - many of whom have had this disease for decades - would sit next to, let alone work with someone they considered a stooge of the government.

The CFIDs Association and Kim McCleary, of course, after months of research broke the news of the CDCs financial mismanagement and lead the way in calling for the program to be moved and new leadership. When the CDC refused to alter their treatment toolkit the CFIDs Association backed out of the provider education program and came up with a new one put together by ME/CFS physicians. When The Headhunter is on her prowl, through, such niceties carry little weight.

Berserkers were a special subset of Norse warriors who as they went into battle had fits of rage so severe that they often ended up killing their own comrades. The best word I have to describe that portion of Hilarys post is precisely that: berserk.

We're having quite a discussion on this at http://aboutmecfs.org/blog/?p=731
kim Mccleary

Cort - wonderful piece of writing! I applaud your words. I have been through all this "backbiting" in my many years with the FM community --I know Kim through FM and now through CFS -- I can't beleieve she is the wicked person portrayed. Until the pharmaceutical cos get involved -- research will be slow -- same thing happened in FM -- the goverment didn't help-- advocates helped themselves and others and now we have ads on Tv for fibromyalgia -- 18 years in the making.

I am joining Lyn Royster in Chicago and other board members - to start raising awareness and funds for the association --

I am short on words,



Phoenix Rising Founder
Thanks Lynn and good luck with the fundraising. That blog end up being an attack session on the CAA. There are some very vocal and and very upset people out there. This was a kind of a small sample but given the fact that they were pretty much given free reign - only a couple of CAA supporters jumped in - one has to wonder what their level of support is. I think they've done some excellent stuff.

These are the areas that I gave the CAA good marks in.

  • Compelling the CDC to create a nation-wide media program
  • Compelling the director of the CDC to get up on a national platform and state CFS is a legitimate illness
  • Compelling the SSA to create a special ruling for CFS
  • Compelling the NIH to create a full advisory committee for CFS (CFSAC) - one of the few in existence for a disease
  • Ensuring that the CFSAC was maintained when it was under attack
  • Playing an important role in the GAO investigation of the CDC in the late 1990’s
  • Creating a successful Physican Education Program on Medscape
  • Providing excellent resources for patients in the E-link and Chronicle
  • Creating a successful Research Initiative that raised a million dollars for ME/CFS - which translated into cutting edge research projects
  • Hiring a major researcher to lead their Research Program
  • National NoMore Campaign taken to cities across the country
  • Financially supporting many conferences on CFS
  • Grassroots Advocacy section
  • Youth Section on the Website
  • Dynamic and popular Facebook site
  • Winning several awards for efficiency - often a bane for non-profits
  • Monitoring the CDC program and undercovering the financial irregularities behind a drop in productivity, calling for new leadership and proposing the program be moved to a different part of the CDC

It was like you doing you know what in the wind. It didn't make any difference at all. Lots of anger - not much support is my assessment.:(

Roy S

former DC ME/CFS lobbyist
Illinois, USA
Please use this thread for discussion of the CFIDS Association in advocacy. IMO, the recent discussion on Cort's blog got a little polarized, but some good statements were made. Hopefully a constructive and extended discussion can continue here. It will be easier to read and follow, and it won't get buried in the blog archives.

It's good to see some other early advocates still alive and kicking. :)


Roy S

former DC ME/CFS lobbyist
Illinois, USA
can't access all comments

I have dial-up internet service. When I try to read the blog comments, I keep getting a "Fatal error: Maximum execution time of 30 seconds exceeded" message. This hasn't happened before yesterday. Anybody have a solution? I doubt that I'm the only one. Thanks.
Reno, NV
Cort, Kim and the CAA have done more than anyone else to advocate for us all , those who have been supporters and advocates with the exception of some Doctors and Researchers, do a year or two then fade away, that has not been Kim nor the CAA. It is not Kim's job nor the CAA'S to carry all of us who are ill to better Treatments and a Cure. That is Our job, We in the M.E./CFS community must Organize, Support and Focus our attacks at the correct Target.


Phoenix Rising Founder
On that note let me note that a new group has just been created to do precisely what Bob proposes - that is to organize, support and focus our attack

That is Our job, We in the M.E./CFS community must Organize, Support and Focus our attacks at the correct Target.

The M.A.D about ME/CFS Group will focus on Making a Difference in the agency that spends about half the money spent on ME/CFS research every year in the US: the CDC. We are going to get out the word about possibly the most important event in our short history: the CFSAC meeting at the end of October at which patients, support groups and researchers will gather to protest the CDC's work on ME/CFS and agitate for change.

You can find the group here: http://forums.aboutmecfs.org/group.php?groupid=4


draft note and symptom revision to CFIDS Assoc - feedback needed

This came out of another thread. I've given it a go although not my area of expertise. Feedback from anyone with any experience of doing things like this would be appreciated. I'd like to send it to the CFIDS Association with an accompanying note expressing appreciation/approval of their revisions and the more reader-friendly approach. THen suggest something like this revision for the reasons Koan and Marylib outlined. I think if there's some way of attaching as many signatures as possible they might look at it more closely than if it is just from me - any ideas - necessary or not?

hmmmmmmmm spent the day trying to do this. Just pasted it from word and the formatting isn't shwoing. Not sure how to get it to show here. It has bullets, bold and indents in word

ahhh think I found out how to attach and show format - see attachments at bottom of page- but the small size of 19.5 kb per attachment made me split it into 5. If there's a better way, love to know it!


CFIDS Association,

As a person with ME/CFS, I am writing to say how much I like the re-visioning and revisions (pun intended) you are doing. It’s impressive. The website and newsletter are much more accessible, interesting and user-friendly. Getting current with facebook, twitter and youtube seems brilliant as I understand they are the most common forms of info gathering and contact these days. And the solveCFS campaign is great at putting faces to the illness and hopefully eliciting empathy and understanding.

The one bit of constructive feedback I can offer at this point is regarding the What is CFS on the solveCFS page and the symptoms page on the CFIDS website.

1st Think it would be good for them both to be the same.
2nd I believe you could make the info easier for readers to process by reworking the layout a bit.

On the solve CFS What is CFS page a friend’s reaction was:

"In my last career, I shaped messages in different mediums on a number of different topics. The message is the one people will take away and not the ostensible message. I hope CFIDS understands that.

The layout gives more importance (bullets) to symptoms which are less common - second string symptoms, if you will - while the cardinal symptoms are buried in a paragraph. And, among the second string symptoms, psychological problems are given too much prominence.

When one is creating this kind of material, these seemingly small things are actually terribly important. Understanding that people usually skim, jump to bulleted info and absorb information in the easiest way possible is crucial to shaping the message in an effective way.

I know I may seem to be nit picking here but I believe this kind of attention to detail is just basic good sense.”

3rd Another friend’s reaction to the paragraph on how debilitating ME/CFS can be was:

“Most ME/CFS people, if not all, are disabled to one extent or another -- as we know all too well! And the "25%" figure actually refers to what most ME/CFS statistics call the "severely affected." These are people who are totally home or bed bound, unable to tolerate light, noise, etc.....the people we seldom hear from because they are not able to be in contact with the rest of the world.

Saying that only 25% of us are disabled is absolutely not true

Also, while most of us may appear "normal" much of the time, people in flare or relapse, or the severely ill, look far from normal. They often look very sick indeed. So I would change "most" to "many." “

I thought the stats across different studies were that 0-20% of people “recover” to usually about 80% of their pre-illness health, about 25% are severely disabled and house or bed-bound and 60% are disabled and unable to work or can only work in a limited manner. I apologize but am too tired to find all the stats at this point.

I hope my comments and the attached sample of a revision are of use to in continuing to revise the sites and make them more reader-accessible.

Again, love the steps you are taking. Feel that you represent me and other ME/CFSers much better now!



What are the symptoms of ME/CFS?

As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it’s not the kind of fatigue experienced after a particularly busy day or week, a sleepless night, or stressful events. It’s a severe, incapacitating fatigue that isn’t improved by bed rest and that may be worsened by physical or mental activity. This is a distinctive hallmark of the illness. Although the name CFS trivializes the illness as little more than tiredness, it is one of the most debilitating illnesses (NOTE – there’s a quote out there somewhere that ME/CFS is more debilitating than cancer or HIV except for the final 2 months – it could fit well here) and brings with it a constellation of symptoms. These symptoms include:
post-exertional malaise: a worsening of symptoms following physical or mental exertion that can require an extended recovery time.
sleep difficulties
problems with concentration and short-term memory
flu-like symptoms
pain: in the joints and muscles, tender lymph nodes, sore throat, and headache.

"The severity of CFS varies greatly from patient to patient, and there is often a pattern of relapse and remission. While some people with CFS are able to maintain fairly active lives, most are affected more profoundly and are disabled to one degree or another. About 25 percent of people with CFS are extremely ill, totally bound to house or bed. Many symptoms of CFS are invisible to others, which makes it difficult for friends, family members, and the public to understand the challenges of the illness."

It’s not uncommon for people with CFS to have the following secondary symptoms:

brain fog and cognitive impairment
visual disturbances: blurring, light sensitivity, eye pain
difficulty maintaining upright posture, dizziness, balance problems and fainting
chills and night sweats
gastrointestinal disturbances
allergies and sensitivities to foods, odors, chemicals, medications, heat and noise
gynecological problems, including PMS
psychological problems: irritability, mood swings, anxiety, panic attacks


Senior Member
I like it, Islandfinn.

I'll bet it took all day to finish. Nicely done.

Just one suggestion, a small tweak.

Where you have "As a person with ME/CFS, I am writing to express my appreciation and approval of the re-visioning and revisions you are doing."

I am wondering, did you mean to say "re-visioning"? Did you mean to say "revising"? Or, was it a reference to altering their vision for their association? Just not quite clear on that.

But like I said, a small detail.

Congrats on putting this together. :)


Senior Member

I prostrate myself at your feet! When seen in the context of my recent, completely unsuccessful, attempts you have just done the impossible; you are now my hero!

What do you think about using post exertional "malaise" as opposed to fatigue?

At your brilliant feet,


Senior Member
Comments on the CFIDS "revision"

Hi everyone

Thanks so much for all this work Islandfinn and the rest of you. I was able to read it briefly but am too ill today to write up the comments I have. The tweaks, you know? Such a fine job everyone is doing


Senior Member
In my last career, I shaped messages in different mediums on a number of different topics. I wonder if they have professionals doing this because, if they do, the message is the one people will take away and not the ostensible message and they must understand that.

Maybe cut out this so none feel defensive. And, cut out any more me (as opposed to ME) you wish. Can't be too little me!

Little me


hi marylib - no worries re timing. Hope you feel better soon. Know it needs a lot of tweaking. I just thought it was a great idea and tried to get down what you and Koan had said. Wasn't up to more at the time.

hi koan (or is it mini-me?) - thought I had edited out the part re ?ing if a professional had written it. Do like the gist of the point you were making on how info is transmitted, and that what's important is the message the reader leaves with - not the ostensible message.