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Time for the Big Talk. How's the CAA doing?

rebecca1995

Apple, anyone?
Messages
380
Location
Northeastern US
The CAA has never been able to grasp that the social conditions most of us endure involve a very high degree of alienation and marginality.

akrasia: Please publish your post as an op-ed essay in The Charlotte Observer. You display a sophistication that puts the rest of us to shame.
 

MEKoan

Senior Member
Messages
2,630
Rebecca,

Thank you for your most illuminating post. While my batteries take a better charge than yours do and run for a longer time, the principle is exactly the same. So, the strategy to recondition me from my current level of functioning to a higher one falls apart in precisely the same way it would for you. There is something fundamental to this illness which causes this pattern. Thank you for describing it so vividly.
 

jackie

Senior Member
Messages
591
rebecca...wonderful post - you said it all (and so graphically...that feeling of total muscle fatigue). For you it's washing/brushing your hair, for me it is sewing a few stiches with a needle. I can type this 1 letter at a time and slowly I'm able to type a long post....but to sew a line of stitches I must hold a piece of cloth in one hand a threaded needle in the other, balancing everything, and pull the needle in and out of the cloth. I can only repeat that for a few stitches before giving out. The more I try to pull that needle through, the WORSE I get! Such a basic and simple act - like Rebecca washing her hair.Hard to believe unless you have to regularly experience it first hand. no matter how many times those of us relate our experiences... it's still almost incomprehensible. j
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
I know, Gerwyn. I really don't understand. I can only assume there is something behind the scenes, some history or politics, perhaps, that accounts for this. Nothing else makes any sense. And, even as we discuss the CME, the studies and WPI is raised?! What has that to do with this? What am I missing?

Confused.

Well it makes sense in light of the email Dr. Judy wrote to someone here about how there's a worldwide effort to squelch the WPI's findings and cut their funding completely. The horrible thing about that is that given the reaction from the CAA it looks like they're in on this.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
The 1997 Chronicle article on pacing is now available: http://www.cfids.org/archives/1998/pre-1999-article14.pdf



The Medscape CME on CFS belongs to Medscape, I believe. The question about renewal applies only to the Continuing Medical Education credits (which expired October 2009 after one year). As I said, I do not know the status of any plan to renew the CME credit (Medscape wanted to add new material after the Lombardi paper), nor whether the Association can or will use the material in any context. The staff is responsible for management of issues like this, and I will follow up to see if there are any specific plans.



I participate on PR on every day I am physically able, and on many days even when I'm not so able. There are staff members also reading these threads very carefully. The opinions expressed here (and elsewhere) have shaped the content of our website communications, such as the changes to the Spark site, the withdrawal of a CFIDSLink article that many here found objectionable, and more.



I don't want to put words in your mouth, Jackie, but I'm hearing your question in the context of this whole thread and others regarding Association materials. I hear a request for an immediate overhaul of all the Association's materials, or at least a commitment to a particular timeline for such an overhaul, and for some PR members this is the only thing that would count as "listening" to patients.

The most recent communications from the Association (such as the DSM-V letter, the article in the American Academy of Pain Management, and the webinar series) have been praised by many PR members. And communications is only one aspect of the Association's work - there's the BioBank, our research grants, and so on. I am not saying that communications is not important; I am saying that the staff has to prioritize their work. We don't have the people to get all this done at once, even though our 8 staff members work 60 to 80 hours a week regularly.

Does your input matter? Does PR input matter? Absolutely! All of this, and countless other "inputs" (I mean in the broadest sense), go into the mix and have an impact on what the staff works on.





As I said, "Medscape did not renew the CME credits in October 2009 because the Lombardi study had just been published. Medscape and the Association expected swift, high-quality replication and validation studies; Medscape wanted to update the CME with information on multiple XMRV studies." That's why this is relevant to the Medscape discussion.

I think it would be fair to say that in October 2009, the Association expected actual replication studies of the Lombardi paper. We expected the federal government to move swiftly, as promised at the October CFSAC meeting, to conduct its blood studies. We expected CDC to publish on its XMRV work. None of that has happened. It's a tough call - revise the CME now (which means deferring other work we're doing) to reflect the negative XMRV studies, and then revise again (deferring other work we're doing) when more studies are published in the next few months? Or focus on research which will produce results like the Light study - a potential biomarker for CFS and post-exertional malaise? Or the BioBank? It's all important, and it can't all get done at once.

I think the CAA should just take down the 2 CMEs they have up right now and then wait on doing the rest. How long would that take? 5 min. or less?
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Hi Jennie,

Thank you for letting us know that the Spark Toolkit is no more. And, thank you, as an agent of the CAA, for being responsive to the community.

I want also to say that you were quite right re how the study came up in this conversation. I owe you an apology. I was letting my frustration get the better of me. Sorry!

I'm afraid I'm not very impressed with the following as it would be easy to misinterpret.

emphasis mine



It could quite easily be that the doctors who would not recommend a "vigorous exercise program" would feel quite justified in recommending a less than vigorous exercise program as a first line strategy across the board. They may have learned that "vigorous" exercise was not the way to go because they have been taught that graded exercise was.

Thanks for your time and your interest.
Koan

Koan, Rebecca, jackie and All, the SPARK! Toolkit is still online and accessible to all in full and it's the same link as before:


http://www.cfids.org/sparkcfs/clinical.pdf

You need to scroll halfway down the page to get to the parts about GET and to see the picture of Peter White and his quote stating that CBT and GET are great treatments for us and have never caused us any harm.

This is just one webpage of the CAA's CME SPARK! materials. I think there are about 11 others and they all tout CBT and GET for us. Stuart listed them all near the beginning of this thread.

Doctors just can't get credits from it anymore but many thousands did. The damage has been done already so why can't the CAA just take it down? Supposedly they have some agreement with the CDC that it has to stay up for a certain number of years.

I wonder if the reason they're complying with this is because they're still receiving funding for it from the CDC?

Correct me if I'm wrong here, Jennie.
 
G

Gerwyn

Guest
Koan, the SPARK! Toolkit is still online and accessible to all in full. :( Doctors just can't get credits from it anymore but thousands did. The damage has been done already so why can't the CAA just take it down? Supposedly they have some agreement with the CDC that it has to stay up for a certain number of years.

I wonder if the reason they're complying with this is because they're still receiving funding for it from the CDC?

Correct me if I'm wrong here, Jennie.

please dont tell me that the CAA gets funding from the CDC that is like the American forces being funded by the taliban
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Just to reiterate: Here's the link to the CAA SPARK! Toolkit and it's the same link as before:

http://www.cfids.org/sparkcfs/clinical.pdf

You need to scroll halfway down the page to get to the parts about GET and to see the picture of Peter White and his quote stating that CBT and GET are great treatments for us and have never caused us any harm.

This is just one webpage of the CAA's CME SPARK! materials. I think there are about 11 others and they all tout CBT and GET for us. Stuart listed them all near the beginning of this thread.

Gerwyn wrote: please dont tell me that the CAA gets funding from the CDC that is like the American forces being funded by the taliban

Gerwyn, that's why many CFS patients stopped trusting the CAA. The CAA claims it has broken ties with the CDC but then Cort tells us that the CAA is beholden to contracts it made with the CDC regarding materials like the SPARK! campaign.

However, given all the information the CAA now has about how damaging those materials have been I think they should at least be consulting a lawyer and taking those materials off the web completely as soon as possible and/or expressing an apology to the CFS community for contributing to the ruination of many lives.

They have other CME materials we've been discussing here that are equally as bad.

How can the CAA make this right and how can they make up all of the damage done to the CFS patients?

By admitting they were wrong to ever publish that propaganda, doing everything they can to remove it from the web and by publishing information on their site that corrects the wrong information they originally used to train all of our doctors in "treating" CFS and by reaching out to reeducate our doctors as quickly as possible with the correct information about the hazards of exercise and the futility and harm caused by using CBT for ME/CFS.

But can we even trust that the CAA fully understands the harmfulness of CBT/GET?
 

MEKoan

Senior Member
Messages
2,630
jspotila said:
Finally, there has been extensive criticism in this thread of the CFS Toolkit for Doctors that was available through the Spark site. The Toolkit was removed last week (I think - I'm losing track of days), and many other changes were made to the site as well.

Now I'm beyond confused. If Peter White holding forth on CBT & GET remain, what on earth was changed?

Here I quote Peter White from: http://www.cfids.org/sparkcfs/clinical.pdf

Controversial Treatments Show Results
Two treatments that are controversial among some patient groups may actually represent real advances in the treatment of CFS. Part of the problem is that they’re poorly understood. The following overview may help demystify these often demonized therapies, which research suggests can help a majority of patients.

COGNITIVE BEHAVIORAL THERAPY.
Cognitive behavioral therapy (CBT) is about examining how your thoughts, feelings, actions and symptoms relate to one another. This enables you to understand the link between them, and then try out new ways of breaking those links. A cognitive behavioral therapist helps you to understand your illness and change the way you manage it. In between sessions you try out new ways of managing your CFS, with mutual feedback on successes and failures at the next session. CBT starts with you setting a baseline of activity and then gradually increasing what you do in order to reverse the cycle of either inactivity or "boom and bust." Other CBT techniques include mutual problem solving of stress and sleep quality improvement. The aim of this therapy is to help you manage your symptoms more effectively and to do more.

GRADED EXERCISE THERAPY.
Graded exercise therapy is all about gradually increasing your physical activity in order to reverse the inactivity and physical deconditioning associated with CFS. Usually, you see a physiotherapist who helps you work out a basic activity routine that you can cope with even on a bad day. Then together you plan to gradually increase the amount of physical activity or exercise you do. The gradual increase takes into account your symptoms, fitness and current activity levels. The aim of this therapy is to help you do more and feel better, since we know that exercise/ activity helps to reverse many of the physical consequences of CFS.

DO THESE TREATMENTS WORK?
Since 1996 there have been eight pub- lished studies of these two treatments, compared to various other treatments. These studies were reviewed by four independent groups of scientists, who all concluded that active rehabilitation with CBT and GET are the most promising of all treatments in adult patients able to attend hospital clinics. Approximately 6 out of 10 patients rated themselves as much better after either CBT or GET compared to before treatment, which was significantly higher than the proportion improving with the comparison treatments. About a quarter of patients were rated as recovered from CFS after utilizing CBT, a rate maintained after five years. This year a further study showed that CBT was also helpful in treating adolescents with CFS. No study has shown any pattern of harm caused by either treatment.

By Professor PETER D. WHITE
PROFESSOR OF PSYCHOLOGICAL MEDICINE,
BARTS AND THE LONDON QUEEN MARY SCHOOL OF MEDICINE AND DENTISTRY, ST.

Is this not the contentious material? Is this not Sparks? Is this not Peter White preaching CBT & GET? Is this not what we were told was now gone? Maybe I misunderstood. What am I missing?

ETA: And, yes "kinesophobia"! Does the CAA really preach that we have faulty illness beliefs in this blatant fashion?

Why?
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Hi Koan and Lily. I think we were all posting around the same time. Please go back and read what I just added to my last post in navy blue so we can all be on the same page and thank you Koan for Copying and Pasting some of the SPARK! materials to here. I don't have that capability.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Wayne said

Mithriel said

"Patients should be advised to rest and save energy as much as possible and avoid all exercise programmes. As they feel better they will naturally increase their activity levels as the vast majority of patients are desperate to do more."

I would agree with what you say above. A question I have: "Isn't your reference to "naturally increase their activity levels" referring to exercise?

Perhaps I'm not differentiating between some kind of formalized exercise program, and other normal physical activity associated with everyday living. I tend to consider any physical activity as exercise.

I think my experience is common to many of us. I have days when I am able to do much more. I can cook food to freeze for bad times or go out for the day. There is no gradual increase. The change is abrupt because what determines my activity level is the underlying disease process not any state of deconditioning or fear of exercise.

If the cause of our illness is found and a treatment given I will be able to do activities immediately. I might have to build up if I want to do exercise like running or swimming and I may never get full function after so many years of illness but I expect to be able to spend a day out of bed, to shower and to cook.

That is why all reference to activity improving our function must be removed from education materials. Our activity level is dictated by the underlying fault in our bodily system NOT the other way round. It is the psyches who have said this and there is no evidence for it whatsoever.

Mithriel
 

Dolphin

Senior Member
Messages
17,567
P.S. On a more personal note, writing as a European intellectual:

I do find the tone, style and presentation of this "clinical.pdf" quite dumbing down. If it were directed to me as a psychologist, in the manner of "Dear Colleague, please find enclosed "clinical.pdf" for medical and psychological professionals - Regards, CAA" (and a psychologist is what I am among other things) indeed - especially in view of White's inclusion - I would suspect some kind of spoof, in view of its tone and format.

However... I may well be missing things here, and I have noticed before that in US academic life (" ' life ' " ? ;) outside the US top universities (Harvard, UCLA, MIT etc.) (!!) a dumbed down prose style has become acceptable these last two or three decades in would be academic prose that in fact seems to address persons with major cognitive challenges...

But maybe it's just how things tend to be written and done in the US (outside the US top universities, that is) :confused: :confused:. Maybe American persons with degrees like to be addressed as so many Fred Flintstones? Ah well... as I said, I've just woken up, and maybe I am just a tiny bit naive about what the latest generations of US bred & educated average academics can handle, prosaically and intellectually... :D (but I sure hope I am mistaken...: "Against stupidity even the Gods battle in vain" - Friedrich Schiller)
I think it was mainly designed like an issue of CFIDS Chronicle - so designed more for lay readers.

I thought there were some nice, easy-to-read articles, in it.
However, it was spoiled for me by the Peter White piece (there was the odd other little bit I didn't like) and that spoiled that for me, in terms of using it in any way to educate doctors. For example, in 2006, we sent the Canadian Overview to all Irish GPs. In 2008 and 2009 we sent some basic information incl. ticksheets for the Canadian definition and also the paediatric definition (which was like the Canadian definition) to all Irish GPs. We included in it a two page sheet with free information they could order from us (leaflets, booklets, DVDs, books, etc). But because of the Peter White article, there was no way it was going on that list. But, as an aside, as somebody who runs a group, I can understand if they have thousands of copies left, why they might want to use them in some way rather than bin them. I would just give them to patients not doctors.
 
G

Gerwyn

Guest
Just to reiterate: Here's the link to the CAA SPARK! Toolkit and it's the same link as before:

http://www.cfids.org/sparkcfs/clinical.pdf

You need to scroll halfway down the page to get to the parts about GET and to see the picture of Peter White and his quote stating that CBT and GET are great treatments for us and have never caused us any harm.

This is just one webpage of the CAA's CME SPARK! materials. I think there are about 11 others and they all tout CBT and GET for us. Stuart listed them all near the beginning of this thread.



Gerwyn, that's why many CFS patients stopped trusting the CAA. The CAA claims it has broken ties with the CDC but then Cort tells us that the CAA is beholden to contracts it made with the CDC regarding materials like the SPARK! campaign.

However, given all the information the CAA now has about how damaging those materials have been I think they should at least be consulting a lawyer and taking those materials off the web completely as soon as possible and/or expressing an apology to the CFS community for contributing to the ruination of many lives.

They have other CME materials we've been discussing here that are equally as bad.

How can the CAA make this right and how can they make up all of the damage done to the CFS patients?

By admitting they were wrong to ever publish that propaganda, doing everything they can to remove it from the web and by publishing information on their site that corrects the wrong information they originally used to train all of our doctors in "treating" CFS and by reaching out to reeducate our doctors as quickly as possible with the correct information about the hazards of exercise and the futility and harm caused by using CBT for ME/CFS.

But can we even trust that the CAA fully understands the harmfulness of CBT/GET?

If the CAA has any links with the CDC then I would not trust them at all.it is like the infamous uk so called Me advocative groups which are directly funded by the UK government.Guess which ones support CBT and GET but pretend not too?They are also the ones that actively promote the Oxford criterea and deem this criterea as appropiate for selecting patients for the pace trial. The situation seems to also be happening in the USA.Beware wolves in sheeps clothing!
 

jspotila

Senior Member
Messages
1,099
For what it's worth, answers to questions

Well it makes sense in light of the email Dr. Judy wrote to someone here about how there's a worldwide effort to squelch the WPI's findings and cut their funding completely. The horrible thing about that is that given the reaction from the CAA it looks like they're in on this.

I can't comment on whether there is a worldwide conspiracy against WPI, because I have no factual knowledge of one. I can completely refute that the Association is not a participant in any such conspiracy, worldwide or otherwise. I would appreciate it if people could refrain from making such accusations against the Association (or anyone else for that matter) without facts to back up those accusations.

Has the CFIDS Assn of America done anything to get money for WPI to research XMRV?

Has the CFIDS Assn of America done anything to get money for ANYONE to research XMRV?

Actually, we have. If you read the report of our visits with Congressional appropriators, you will see that we brought the XMRV findings to their attention and used it as part of the basis for our budget language.

I think the CAA should just take down the 2 CMEs they have up right now and then wait on doing the rest. How long would that take? 5 min. or less?

Koan, Rebecca, jackie and All, the SPARK! Toolkit is still online and accessible to all in full and it's the same link as before

The damage has been done already so why can't the CAA just take it down? Supposedly they have some agreement with the CDC that it has to stay up for a certain number of years.

I wonder if the reason they're complying with this is because they're still receiving funding for it from the CDC?

Correct me if I'm wrong here, Jennie.

I will try to clear up the confusion.

There are two CME courses, but neither is under the direct control of the CFIDS Association. The first one is the Medscape course, and as I explained as recently as yesterday, that course is on Medscape's site and under Medscape's control. The second one is the CDC's CME course from 2005-ish. Kim McCleary has asked the CDC to remove her name from that CME but has received no response.

There are two documents that have been referred to as "Toolkits" which may be contributing to the confusion. The first is the Physician's ToolKit (it says Toolkit on the cover) and that has been removed from the Spark site, as I said. The article that Tee is talking about is actually "Clinical Care for CFS" written by Marcia Harmon for the Chronicle in 2005-2006. The pdf link does work, but the article cannot be accessed from the Spark site because it is no longer linked.

Here is what is actually linked from the Spark page for healthcare providers: article from the American Academy of Pain Management (2010); Canadian Case Definition; Development an; Individualized Treatment Plan for CFS; Pharmacologic Treatments for CFS; Pearls of Wisdom from a CFS Physician; Nurses Can Play a Key Role in CFS Management; Medications Used to Treat Orthostatic Intolerance; Think Inside the Envelope; Managing Your Energy Envelope; Doc to Doc: The Skinny on Exercise and CFS; Visual Dysfunction in CFS; Gastrointestinal Problems with CFS; Occupational Therapy for CFS; Differentiating CFS from Depression.

Finally, the Association does not have an agreement to keep the Spark site up for "a certain number of years." I don't know where that rumor comes from. I have been saying for months now that the contract is almost over, and the future of the site will be re-evaluated at the conclusion of the contract. The contract is in its last month or so (under a no-cost extension to give staff time to finalize the reporting requirements due). Despite that, the staff has spent time reviewing and revising the site over the past month.

To sum up:
  • The Medscape CME is under Medscape's control
  • The CDC CME is under CDC's control, and they have not responded to Ms. McCleary's request that her name be removed
  • The Physician's Toolkit is not linked from the Spark site
  • "Clinical Care for CFS" is not linked from the Spark site, though it still exists on the server
 

rebecca1995

Apple, anyone?
Messages
380
Location
Northeastern US

...the SPARK! Toolkit is still online and accessible to all in full and it's the same link as before:


http://www.cfids.org/sparkcfs/clinical.pdf

Three words: Oh. Mah. God.

The only difference is that it's no longer accessible from the main website --> Spark --> View Campaign Elements.

I'm speechless.

p.s. Just to clarify, this brochure (with Peter White) is the Clinical Care brochure (different from the Toolkit for Doctors, featuring Bill Reeves). We were told in January or February that the Peter White one had been taken down!

[Edit: I posted at the same time as Jennie.]
 

Dolphin

Senior Member
Messages
17,567
I am with you Tom, and - as I've said privately to you, and now say again in a bit different fashion: - I wish other countries were as blessed with ME-advocates like you and Orla! The CAA and other patients' organisations should take you and Orla as an example and standard of excellence!.
:Retro smile: Thanks Maarten. We do what we can.

Maybe someone high-up in the CAA could make contact with you, since you are clearly a most capable team with lots of fine ideas and information, and also quite rational and reasonable! It might make it a lot easier for them to get GOOD documentation on line.

O, about the prose and intended audience: I am glad to read it was "designed more for lay readers" - hope you're right (though then I don't understand "clinical.pdf" - but OK: I have a logical hang-up or two :D).
I just looked at the back of the printed copy I got at the end of 2005 or early 2006 as a member of the CAA. It says, "we hope you enjoy this special issue of the CFIDS Chronicle", so I believe that was its main purpose and it was designed so that it would not be too hard for their members to read. They then decided to make use of it in other ways.

And I see what you're saying about having lots of paper copies left... personally, I'd rather say and hand out nothing rather than what contained dangerously false and misleading information, or indeed what contained material very fit to provide Peter D. White with status and acclaim he just shouldn't get, but I am no policy-maker for the CAA, nor a US-citizen, and only state my own preference here.
I can see where you are coming from. I would be reluctant to have such articles recommending exercise also and the Peter White article would not be in anything I would put together. It is a bit of a dilemma. It could be ripped out or perhaps other articles could be included at the same time. I got a few copies but just lent them to people who I thought wouldn't be taken in by the Peter White article.

However, the pdf-material for the website is easily fixed with an Adobe-editor: Load, excise, done, upload over the old one: Shouldn't take more than 5 minutes, plus perhaps another 5 for thinking of a diplomatic line to motivate the excision.
I don't like telling other group leaders what to do too much but that makes sense to me.

My best wishes and regards to the great Irish team of ME-advocates,

Maarten.
Thanks Maarten. Please keep sharing your own thoughts and insights also.
 

MEKoan

Senior Member
Messages
2,630
Originally Posted by Maarten Maartensz
However, the pdf-material for the website is easily fixed with an Adobe-editor: Load, excise, done, upload over the old one: Shouldn't take more than 5 minutes, plus perhaps another 5 for thinking of a diplomatic line to motivate the excision.

I don't like telling other group leaders what to do too much but that makes sense to me.

Thanks Maarten. Please keep sharing your own thoughts and insights also.

If that fix can be done, in my opinion, it most certainly should be done.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
I think it was mainly designed like an issue of CFIDS Chronicle - so designed more for lay readers.

I thought there was some nice, easy-to-read articles, in it.
However, it was spoiled for me by the Peter White piece (there was the odd other little bit I didn't like) and that spoiled that for me, in terms of using it in any way to educate doctors. For example, in 2006, we sent the Canadian Overview to all Irish GPs. In 2008 and 2009 we sent some basic information incl. ticksheets for the Canadian definition and also for the paediatric definition which was like the Canadian definition to all Irish GPs. We included in it a two page sheet with free information they could order from us (leaflets, booklets, DVDs, books, etc). But because of the Peter White article, there was no way it was going on that list. But, as an aside, as somebody who runs a group, I can understand if they have thousands of copies left, why they might want to use them in some way rather than bin them. I would just give them to patients not doctors.

Can't we just have a giant bonfire? :victory:
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Maarten wrote: O, about the prose and intended audience: I am glad to read it was "designed more for lay readers"...

The CAA's CME (Continuing Medical Educational) materials Spark! was written for doctors so they could learn how to diagnose and treat ME/CFS. They got credits for taking the course. Many thousands have taken it.

That's what my old Sig line was referring to.

I really appreciate seeing people here from other countries caring and taking a stand about the harm the CAA is causing ME/CFS patients. I do believe they are affecting us all but I never expected this kind of support.

Here's the old thread where I went through that CME from SPARK! line-by-line in December. Do you remember?

http://www.forums.aboutmecfs.org/showthread.php?1911-The-CAA-Pamphlet-to-Educate-Doctors/page2

It was Stuart who first brought these materials to my attention and I decided back then to take the first link he gave and thoroughly go through it.

Rebecca- I'm still laughing at your "Oh. Mah. God." :tear:
 

rebecca1995

Apple, anyone?
Messages
380
Location
Northeastern US
jspotila To sum up: [* said:
The Medscape CME is under Medscape's control
[*]The CDC CME is under CDC's control, and they have not responded to Ms. McCleary's request that her name be removed
[*]The Physician's Toolkit is not linked from the Spark site
[*]"Clinical Care for CFS" is not linked from the Spark site, though it still exists on the server

Thanks for posting this summary, Jennie. I have a better understanding of the situation now.