CAA: GET and CBT effective

Kim McCleary's response on cnn.com to the PACE Trial results bums me out.

http://www.cnn.com/2011/HEALTH/02/17/chronic.fatigue/

EDIT: This text of the CNN article added:

The president and CEO of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, Kim McCleary, said the study focused on treatments that many in the United States have no access to.

"I think it would be challenging, at least in the U.S. system, to purchase the services that they've tested in this trial," she said in a telephone interview.

The alphabet soup of acronyms that represent the interventions used in Britain is "just not something that our health care service offers, is reimbursable, or is really available here," McCleary said.

The report comes as researchers have been making progress on the possible role of viruses in causing the disease, she noted. "It's kind of a shame that we're still limited to talking about approaches to coping mechanisms as the only therapy that's available," she said...

McCleary said national estimates put the number of Americans with CFS at 1 million to 4 million.
[EDIT; reference to NPR piece and facebook added:]
and it bums me out here too on NPR (audio- CAA position from 2:00 to 2:30- and accompanying article, which differ a bit, here):

http://www.wbur.org/npr/133865482/p...e-look-best-to-treat-chronic-fatigue-syndrome

From the NPR audio at 2:15:

McClearly's group agrees the British study does show CBT and Graded Exercise do produce some benefit, but it criticizes the research for not attempting to find a biological cause of the illness.
and here on CAA's facebook:

www.facebook.com/notes/the-cfids-association-of-america/falling-off-the-pace/10150148445700539

Structured programs that seek to expand function and reduce symptoms may provide modest benefits when added to standard medical care, but they do not offer complete resolution of symptoms or cure, and the benefits are equivalent to those seen in other studies of chronic illness.
[Edit: first sentence edited]
McCleary's only reported problems with this study is that these therapies- GET and the evil version of CBT- which she calls beneficial on CAA's facebook page and in the NPR interview- aren't available in the US and that studies of psychological factors may make "CFS" patients feel that people are saying "CFS" is psychological. It seems apparent to me now that giving Peter White his own little section in the Spark materials to promote GET as the "only treatment proven effective" was no oversight or accident!

I did actually really hope that CAA would shift it's approach when all the criticism settled in and it's board had more time to reflect on the fact that every aware ME patient knows what CAA is doing and that consequently its revenues are going to continue to slide until there are not enough to support it at some point in the not too distant future.

Something is really weird here, imo. The fact that she is continuing in this destructive path i can comprehend. The worst that can happen to McCleary and Vernon is they milk CAA for all the cash they can before it implodes and they get an early retirement with a nice nest egg. But why is the board, who are unpaid patients and patients' relatives behind them?? They see McCleary piloting CAA into the ground while packing her parachute with cash to soften her landing. Why are all 15 or how ever many of them there are just sitting there and supporting her?? Is she hypnotoad? Using jedi mind tricks on them? Noone can be that charming. Am I missing something??

I understand she is a hard worker. She seems from Jennie Spotila's reports and what i have seen that she gets a good amount of work done. It seems from my outside view that she would be a truly excellent executive vice president or chief operations officer, but I am hardly alone in my view that she has shown (over 20 years) that she is a very bad choice for CEO of CAA.

Her comments on the PACE trial results are a case in point. The PACE paper isn't some random thing out of left field. We have known about the PACE trial and methodology for a long time and it has been criticized heavily and in detail by others. She should have been prepared and ready to say only four things when media called:

1. This is a scam
2. The cardinal feature of ME is PEM
3. They do this scam by using a fake definition to lie and say tired and depressed people have ME and
4. These 'therapies' are human rights abuses: lying to patients to tell them they have no disease and to exercise, the exact thing that will make their severe illness even worse.

George W. Bush was a moron and he could stay 'on message'. She can do this. Once she has mastered this, she can move on to 'freestyling', not before. And until she can deliver messages which benefit patients, she should not speak.

I would prefer it if CAA would truly represent patients views such as those i've seen expressed on this forum and mecfsforums.org. I think this would benefit both patients and CAA enormously. And I and, I believe, the patient community would really rally behind CAA and we would have true unity!

But if CAA's mission is simply to stimulate ME research, but not to represent or advocate for patients, then it should make this explicit to everyone to whom it is communicating and not speak on any issue other than stimulating ME research. If a reporter asks for commentary on other subjects, refer them to an org that explicitly represents patients such as PANDORA, MCWPA or WPI or other, hopefully more out-spoken orgs which may emerge.

Comments

As I am not American and not really privy to the whole history of Kim McCleary, I have never commented on her role before.

However, this is just too much and I must say 'hear, hear' regarding justinreilly's comments. Unless Ms. McCleary was badly misquoted, her comments in this story should be enough to get her fired. Even I could have come up with the four points Justin mentions, and for her not to take the opportunity to clearly and strongly set the record straight on the PACE trials is a complete failure to perform her duties adequately.

If she is unable to speak for the community she should step down.
 
Yes, McCleary’s quotes in the CNN article are pathetic. Is it possible she was experiencing brain fog at the time? Or if these are actually her quotes, then perhaps she could use some CBT herself to eliminate some inappropriate beliefs about this illness and its treatment. Justin, I may have misunderstood--are you suggesting that she be replaced with George W?
 
I have to say I'm stunned by her comments. If she is indicating by her statement that she thinks these tools (if you can call them that in reference to ME) are one she would like to see used in the USA, all I can say, is God help us.

I have read horrible stories about the abuses and the damage being done to those in the UK as a result of these and other treatments.

I remember a time when the CFIDS Assoc of America didn't just look at research but at what was best for the patients who supported the organization. What a sad essay on what used to be a great organization.
 
pamb- McCleary said the same thing in the NPR interview. The audio and a written piece, which differs a little, are here:

http://www.wbur.org/npr/133865482/p...e-look-best-to-treat-chronic-fatigue-syndrome

PR thread on NPR interview:

http://forums.aboutmecfs.org/showthread.php?10115-NPR-piece-on-Lancet-article-re-PACE-study

NPR piece on Lancet article re: PACE study

Wow. I was surprised to today to hear NPR "All Things Considered" do a story on CFS. Of course about the Lancet PACE "study." And the piece was horrible, truly horrible. Just earlier today I was thinking that I was on the fence about CAA: yeah they've done some good stuff, just not enough. BUT, in the NPR piece, they interview Kim McCleary, and she put her foot so far into her mouth I don't think it can be removed. I know the media often takes things out of context, but they state that she said something to the effect of (I'm paraphrasing what they paraphrased her as saying): "Yes, the Lancet study did show a benefit [from CBT & GET], but it's too bad they didn't study a biological cause."

No, no, no! Why does she give credence to the study at all??!! The study is fully discredited by not studying patients that fit any acceptable criteria for having ME/CFS. That's what she should have said. She also is quoted as supporting Sharpe's comments in his interview, that the reason patients are disgruntled is because the study supports a psychological cause. If she said that this is in error, it was cut off. She should know better, being in the position of spokesperson, how to talk to the media. You have to control the interview. You don't answer the question asked; you deliberately put forward the message you want to convey and never stray from that, or you will be taken out of context. I don't see how she can put this behind her; it is too egregious.

Then they interviewed some guy named Bruce Campbell, who "got over" CFS by gradual exercise. Poor guy tried to redeem himself by saying that it's more important not to overdo, and that he had hurt himself many times by doing so, but the bottom line that came through was: 13 years ago he could only walk a few minutes, and now he just celebrated his 65th birthday by hiking in the Sierras! Aaargh!

Of course, the piece did not discuss any of the limitations of the study. The only "other side" was that patients won't like it because it underscores the belief in a psychological cause. Oh, those poor deluded crazy, lazy people. If only they accepted they were crazy, they could get better! That's sarcasm, by the way.
 
silicon;bt4320 said:
Yes, McClearys quotes in the CNN article are pathetic. Is it possible she was experiencing brain fog at the time? Or if these are actually her quotes, then perhaps she could use some CBT herself to eliminate some inappropriate beliefs about this illness and its treatment. Justin, I may have misunderstood--are you suggesting that she be replaced with George W?
The decider? well i didn't mean that, but as an interim measure.. no, no never mind.

unforch, she can't chalk it up to brain fog on account of her non-pwME status. That is one advantage of having ME; I just blame everything on it. (btw- i heard it's pretty awesome to have tourette's too: you can just curse out your boss and then be like "sorry, tourette's. please refer to ADA if you are thinking of not promoting me") ;)
 
I don't see any problem with this

Structured programs that seek to expand function and reduce symptoms may provide modest benefits when added to standard medical care, but they do not offer complete resolution of symptoms or cure, and the benefits are equivalent to those seen in other studies of chronic illness.
I agree its not very exciting....it's not very compelling reading but it is accurate and in my opinion its stating exactly what the CAA needs to say; ie CBT works the same in CFS as it does in other chronic diseases and that it may provide modest benefits...in my opinion -that's completely accurate and is enough to put CBT in its place. You're never going to be able to say that CBT doesn't work to some degree. There are too many studies that show it does - in CFS and in so many disorders. Saying that it just doesn't 'work' to some degree would make the organization look idiotic

The proper thing to say in my opinion is that it doesn't work particularly well (has modest benefits) and that the effects are no different in CFS than they are in other disorders...That's all you need to do to 'kill' the CBT giant and shove it back into the background where it belongs and that's what that sentence did (in a very dry manner).

However I agree with you about the rest of the CAA's response; it was decidedly underwhelming and I would have hoped for more. I would have emphasized the very modest benefits of the study....that is the way to put CBT in its proper place and they missed that by a wide margin. The article was too long and the key points were buried to some extent.

They should also, in my opinion, contextualized it better - noted that contrary to other diseases CBT/GET are regarded as the only suitable therapies for CFS in many places - which suggests that CFS is a behavioral disorder and hammered on the point that this study proves it is not.
 
Cort-

you're talking about the written NPR article. The actual audio is problematic.

I have changed the title of the post and the wording in the text to reflect both of her objections to the PACE study and the fact that i don't know which is her biggest objection.
 
dominique;bt4321 said:
I have to say I'm stunned by her comments. If she is indicating by her statement that she thinks these tools (if you can call them that in reference to ME) are one she would like to see used in the USA, all I can say, is God help us.
.
She doesn't say that at all - nowhere does she say these are the tools the CAA would like to see used in the US! her statement suggested that they couldn't be used in the US. I agree that's it not a particularly strong statement! but she's not advocating for their use.

Justin, while I agree that the CAA's response was underwhelming in some areas it does not say use CBT and GET as your title implies.
 
Cort;bt4327 said:
You're going way to far in my opinion Justin when you say Kim's biggest objection to the study was that its not available in the US. Think about it.She's not free to choose what the reporter will print. I'm sure that was just one of Kim's many objections to the study and the reporter chose to print that way. At this point you have no idea at what the CAA's biggest objection to the study is...

I agree that it would have better if she had stayed on message. She does have a point, though, - she's saying that even if it was effective there's no way it could be used as a treatment in the US.

I would wait to see what the CAA's complete response to the study is.
We have CAA's complete response to the study. I posted the link (to CAA's facebook page) and you cite CAA's response yourself below.

Her point that as you say "even were it effective there's no way it could be used as a treatment in the US" is totally beside the point and just noise distracting from what should have been her point: this study is invalid and a scam.

And what is the matter with this?

[text from facebook page]

I agree its not very exciting....it's not very compelling reading but it is accurate and in my opinion its stating exactly what the CAA needs to say; ie CBT works the same in CFS as it does in other chronic diseases and that it may provide modest benefits...in my opinion -that's completely accurate and is enough to put CBT in its place. You're never going to be able to say that CBT doesn't work to some degree. There are too many studies that show it does - in CFS and in so many disorders. Saying that it just doesn't 'work' to some degree would make the organization look idiotic

The proper thing to say in my opinion is that it doesn't work particularly well (has modest benefits) and that the effects are no different in CFS than they are in other disorders...That's all you need to do to 'kill' the CBT giant and shove it back into the background where it belongs and that's what that sentence did (in a very dry manner).
Cort, I think the benign/good version of CBT (helping the patient to adapt to the illness and pace) is good. Obviously, in the PACE trial they were studying evil CBT which tells people they have no physical disease and that they have a neurotic 'fear of movement' which they have to overcome because GET is the only 'therapy' proven to work. Do I even need to explain why GET is not 'modestly beneficial'?

Mithriel pointed out in a comment to your article, reproduced below, that they defined 'adaptive pacing' as adhering to a schedule which does not allow for sleep and only resting at specific times for a set number of minutes not defining it as the "pacing" we all (including the patient orgs that they cite as supporting it) know and love. They then use the results from 'adaptive pacing' to directly discredit 'pacing' without mentioning there's a difference. They conclude that all "CFS/ME" patients in Britain should be given evil CBT and GET and not pacing. This is evil and extraordinarily destructive.

From Mithriel:

There are just a few points for US readers.

Adaptive pacing is not at all like pacing. It involves keeping a diary and adhering strictly to a tight schedule. No sleep during the day, rests for a specific number of minutes at a certain time for instance. It is very difficult to do and completely ignores how a person is feeling. It is the complete opposite of the pacing that helps patients where you listen to your body. In some ways it is worse for ME than GET as you can do your daily walk when you feel up to it and pace yourself the rest of the time.

PDW hates pacing and has called this travesty pacing so as to discredit the patient experience. Doctors will now tell us not to listen to our bodies when that was never trialled at all.

They did not find that CFS and ME responded the same way. They selected first using the Oxford Definition but ME patients are actively excluded at that point as they often have neurological signs so they cannot be selected afterwards. Also, PDW has his own meaning of PEM, it is the soreness you experience when you are deconditioned then exercise. This trial said nothing about neuroimmune disease.

They had great difficulty recruiting for the trial. Anyone who knew anything about it would not enter. There were complaints about the set up from all the patient organizations except AfME so all members knew of the flaws. They were forced to change the criteria for entry and started asking GPs to send along fibromyalgia patients.

It was a mess and the results dreadful despite their best efforts to get a positive result, yet they have been reported as wonderful in the UK and will be used against us. The rest of the world may see them as laughable, rightly, but our plight is enormously increased. Our present government has declared war on the disabled, every single person on benefits is to be reassessed and this paper spells disaster for those of us with ME.

Mithriel
 
Originally Posted by dominique
I have to say I'm stunned by her comments. If she is indicating by her statement that she thinks these tools (if you can call them that in reference to ME) are one she would like to see used in the USA, all I can say, is God help us.
Cort;bt4331 said:
She doesn't say that at all - nowhere does she say these are the tools the CAA would like to see used in the US! her statement suggested that they couldn't be used in the US. I agree that's it not a particularly strong statement! but she's not advocating for their use.

Justin, while I agree that the CAA's response was underwhelming in some areas it does not say use CBT and GET as your title implies.
CAA says in the facebook page (it doesn't indicate by whom it's authored) and she is paraphrased as saying in the NPR radio piece that she agrees that the study shows that CBT and GET are somewhat beneficial. I believe she implies that we should have evil CBT and GET in the US. She is quoted as saying that we do not have these 'therapies' available in the US and that it's "kind of a shame" that all that's available is "coping" strategies. Even if the CNN article is ignored, she (or CAA) still is saying on the facebook page and the NPR radio piece that evil CBT and GET were proven effective. This is factually wrong and very destructive to pwME.

Regardless, I have changed the title to the blog as I posted in the comment immediately before your comment.

I don't think you can find one person other than you, who is not employed by or a director of CAA, who does not think her comments re PACE study were seriously inappropriate.
 
Justin - you have a point....the point to make is not that CBT is effective (I hope she didn't say 'effective') or 'somewhat beneficial - for some people - which is fine with me) but that the era of CBT dominating treatment studies and research in the UK etc. should be over....I think they missed the boat on that....I thought it was a real opportunity to do that.

Given the all the positive press I think they should have done that....It was not time, in my opinion, for a kind of dry discourse on the paper....Or a dry discourse would have been fine - if it was followed up with more. Given the unbalanced media coverage I think a more forceful response was called for.
 
Due to difficulty concentrating on long threads, I can't comment on most of this. However, seeing CBT mentioned reminds me of a research study later written up in "Brain"... I still have the article. The study found that overall, CBT was lastly....generally... ineffective. Perhaps I shouldn't comment? Because my cognitive issues keep me from reading this entire thread. ?
 
Nico;bt4336 said:
Due to difficulty concentrating on long threads, I can't comment on most of this. However, seeing CBT mentioned reminds me of a research study later written up in "Brain"... I still have the article. The study found that overall, CBT was lastly....generally... ineffective. Perhaps I shouldn't comment? Because my cognitive issues keep me from reading this entire thread. ?
Nico,

You're right, imo. There have been no valid studies, to my knowledge that said that GET or the kind of CBT practiced in Britain is effective. There is at least one study saying they are ineffective and all the patient surveys say they are the most harmful "treatments" of all.
 
pamb;bt4314 said:
As I am not American and not really privy to the whole history of Kim McCleary, I have never commented on her role before.

However, this is just too much and I must say 'hear, hear' regarding justinreilly's comments. Unless Ms. McCleary was badly misquoted, her comments in this story should be enough to get her fired.
+1

I also have not commented before but this was a simple exam with simple criteria for success and failure: get our message across to the media and inject some truth into the debate.

This was a massively, massively important issue, and she completely failed to get the message across. It's a hugely important part of her job to do that - or it should be - but she can't or won't do it, so it's time for somebody else to have a go.

If her strengths don't lie in advocacy or relations with the press, she should confine herself to doing what she's good at. I'm sure there are people out there who can get this right.
 
The CAA had some good stuff in their analysis - they got the essential factors in there in my opinion (limited benefits, too much focus on CBT, effects CFS just as it does other chronic illnesses) - but I agree with Mark....they did not get the message across that really needed to get across.

I hope they will release something that is shorter and more to the point - that will help counteract all this positive press; perhaps a Press Release. The vital stuff, from my point of view, was in the very end of the document and there was alot of information to absorb before you got there. Counteracting the spin in the Press has to be a key goal for the community right now and by virtue of their size they are the best ones to do that.
 
Sad, Sad weekend for ME/CFS patients. This garbage has been all over the CNBC ticker. I wonder how much damage has already been done.

And we don't even have a decent response from the CAA. Let's be honest, it is a pathetic response.

EMAIL THE CAA AND LET THEM KNOW HOW YOU FEEL.
 
I've been a reporter for 20 years, 17 of those with a major international financial wire service and know a thing or two about how to handle the press. It is so completely obvious that McClearly is totally clueless.

Whenever someone in the press asks you a question, you answer with the response your organization wants to promote. You don't answer the reporter's question, that's how you keep them from writing things you don't want in print.

The proper answer to a GET, CBT question should be something like this.

Reporter: "What do you think of the study out of the U.K. saying GET and CBT can help people with CFS?"

Answer: ``The most important research right now must be directed at discovering the role that the contagious retrovirus XMRV plays in the development of the illness. Recent research has caused Canada, New Zealand, Austrailia and the American Red Cross to ban people with CFS from donating blood because of the fear they carry a contagious retrovirus.."

Reporter: "But do you think GET can help?"

Answer: "Research that doesn't get to the cause of CFS does little to advance the science.''

Reporter: "Doesn't CBT help most anyone with an illness?"

Answer: "Until we know the role the contagious retrovirus plays in CFS we can't know the proper treatment and research that wastes time and money on anything else, shouldn't be in the public dialogue.''

Do you see how nothing that is said here can be used in a way that hurts the CAUSE?
 
justinreilly;bt4332 said:
We have CAA's complete response to the study. I posted the link (to CAA's facebook page) and you cite CAA's response yourself below.

Her point that as you say "even were it effective there's no way it could be used as a treatment in the US" is totally beside the point and just noise distracting from what should have been her point: this study is invalid and a scam.



Cort, I think the benign/good version of CBT (helping the patient to adapt to the illness and pace) is good. Obviously, in the PACE trial they were studying evil CBT which tells people they have no physical disease and that they have a neurotic 'fear of movement' which they have to overcome because GET is the only 'therapy' proven to work. Do I even need to explain why GET is not 'modestly beneficial'?

Mithriel pointed out in a comment to your article, reproduced below, that they defined 'adaptive pacing' as adhering to a schedule which does not allow for sleep and only resting at specific times for a set number of minutes not defining it as the "pacing" we all (including the patient orgs that they cite as supporting it) know and love. They then use the results from 'adaptive pacing' to directly discredit 'pacing' without mentioning there's a difference. They conclude that all "CFS/ME" patients in Britain should be given evil CBT and GET and not pacing. This is evil and extraordinarily destructive.

From Mithriel:
I've been a reporter for 20 years, 17 of those with a major international financial wire service and know a thing or two about how to handle the press. It is so completely obvious that McClearly is totally clueless.

Whenever someone in the press asks you a question, you answer with the response your organization wants to promote. You don't answer the reporter's question, that's how you keep them from writing things you don't want in print.

The proper answer to a GET, CBT question should be something like this.

Reporter: "What do you think of the study out of the U.K. saying GET and CBT can help people with CFS?"

Answer: ``The most important research right now must be directed at discovering the role that the contagious retrovirus XMRV plays in the development of the illness. Recent research has caused Canada, New Zealand, Austrailia and the American Red Cross to ban people with CFS from donating blood because of the fear they carry a contagious retrovirus.."

Reporter: "But do you think GET can help?"

Answer: "Research that doesn't get to the cause of CFS does little to advance the science.''

Reporter: "Doesn't CBT help most anyone with an illness?"

Answer: "Until we know the role the contagious retrovirus plays in CFS we can't know the proper treatment and research that wastes time and money on anything else, shouldn't be in the public dialogue.''

Do you see how nothing that is said here can be used in a way that hurts the CAUSE?
 
Caroline, you have the right of it. From what I can see, McCleary simply has no instincts for communicating with the press. Anyone who is the front-of-the-lines face for the CAA who doesn't have this natural instinct is as much a catastrophe as a Hamlet who doesn't know the lines. Or, switching metaphors, it's like a political candidate who has some good ideas on his web page and issues some good p.r. from his office... but if he/she can't perform in a debate, when all eyes are on him (her), everything goes south, and never recovers. I admire the BioBank, but I have no confidence that McCleary can handle herself with the press.

My own experience this way is limited, but I had to promote a book I wrote on radio. I found myself being broadcast, live, with some Howard Stern types on the other end of the line. I remember being asked "why should anyone care about this stupid woman [the subject of the book] who was part of this really stupid industry?" Since there was a lot of joshing in the interview, I said, "Let me correct you, in case your listeners wonder why you have suddenly become a stupid interviewer asking a smart writer stupid questions." The guy became a pussycat!

The moral: If the press or media is dragging the conversation in the wrong direction, you have to grab the steering wheel and make them change direction. Do not engage with what will hurt you.
 
In light of comments on the press in this thread, I'm reproducing here what I wrote on the PR thread about the NPR piece referenced by Justin above:
I wrote the following to both ATC and the NPR Ombudsman:

Re: Your Piece on 2/18/2011 Psychotherapy And Exercise Look Best To Treat Chronic Fatigue Syndrome

As a faithful contributor and devoted, daily listener for decades, I am appalled at the bias in your coverage of ME/CFS. I never hear any coverage of this illness and now the first thing I do hear portrays this methodologically flawed study as definitive ("Psychotherapy And Exercise Look Best To Treat Chronic Fatigue Syndrome"? how is this title not an editorial comment by ATC/NPR?). This is beyond outrageous! It is only furthering the perpetration of the massive discrimination against millions of very sick people by our society and government. ATC has stepped way over the line with this one. Are we now to take medical advice from you? Bruce Campbell does not speak for us patients. He is a charlatan who preys on the emotional vulnerability of desperate people if he counsels them. Did Kim McCleary address the fact that the diagnostic criteria used to select the population in this study was so flawed as to not be representative of the illness at all, or did you edit out any critical parts of her statement? If she didn't say so, she should have done. If it was edited out, then what ATC/NPR did is tantamount to giving medical advice. I expected more from ATC. You have just destroyed in one fell swoop any trust I may have had in you as an unbiased news source. Congratulations on a journalistic coup d'etat one listener at a time. CBT and GET are not cures for any illness. Only an idiot would think that people who must rest every minute or two while walking or they may suffer a relapse aren't sick with a physical, biological disease. Tell it like it is. The people doing these studies have an agenda, which is to make sure no research or healthcare agency funds ever get expended finding or treating the real cause of this illness. The longer they can perpetrate the myth that patients just arent doing it right, the longer they can delay any real, useful research. The media has been duped into complicity with this agenda and I am shockingly disappointed that NPR is no exception.




I encourage anyone who has the wherewithal to write what they are able to here http://help.npr.org/npr/includes/cus...contactus.aspx .
Believe me, I was hopping mad when I wrote that.

I agree that McCleary in no way, shape or form controlled this interview. She did not further the CAA's stated mission of stimulating research with her statement, in the least. If we patients must deconstruct her statements, as Cort did above, you can be sure the public will not comprehend the issue at all. There are no biomedical research funds because this ilness is a public relations disaster!

CFS, HOOEY. What other disease has even the word "chronic" in it's name, much less "fatigue"! And I think we all know what the only other commonly known "syndrome" is - AIDS! If you have diabetes, it's not called "chronic diabetes", even though it is a chronic condition; cancer is not "chronic cancer" - people are thought of as "living with" cancer or have "survived" cancer; congestive heart failure/disease is not labelled "chronic congestive heart failure/disease", or autism, or ALS, or ALD, or MS, or Lupus ... I could go on. Let's face it, the only thing "chronic" about this is the chronic lack of concern displayed by our friends and families, the public, the press, the doctors, the scientists and the governments of the world. Sure it's a "syndrome!" , but only because we've been repeatedly told that we have no disease and no symptoms unlike other diseases, all evidence to the contrary.

Guess I have Chronic "No One Gives a Rat's A** Disease", or is it the rest of the world who has that? I'm confused!!! I'm just wondering if that's a murine virus. Does anyone know? ;)

I'm fed up with the Catch 22 nature of "Sorry, there is no cure or known cause, so we won't bother even looking for one" excuse. Bless WPI for not using that tired old saw and trying to DO something, instead.

Thanks for letting me blow off some steam, guys. Didn't mean to hijack your blog, Justin. Sorry.
 
Two things 1) I love the name "no one gives a rats a** disease. If CFIDS or some other organization that spoke for the community put out a press release saying they were renaming the disease "no one gives a rats a**" you would get a lot of press :) 2) telling a journalist that their coverage is bias is a big yawn for the journalist. If I could only describe to you how much email a reporter gets saying that you would be blown away. The best example I can use is when I covered the big Tea Party event in Washington last year. For days I received messages saying -- you are so bias you should work for Fox News. -- Next email says -- you are so bias you are nothing but a White House mouthpiece--next email -- the liberal media is so bias, blah, blah, blah -- next email -- You should work for the Tea Party because your writing is so bias in their favor. That would go on for days.
 
Hi CarolineTAnderson,

Thanks for your insight into the journalist's world. Can you give us a hint as to how to write letters to journalists who have written poor pieces? I try to be courteous and politely point out the errors and suggest that I would be pleased to help get to the truth etc. But I'm never sure what works. I'm guessing we need to grab their attention in the first line or two, because they don't pay much attention to each email/letter? Or perhaps you think there's no real way of getting through to them?

Thanks,

Mark
 
illsince1977;bt4359 said:
Guess I have Chronic "No One Gives a Rat's A** Disease", or is it the rest of the world who has that? I'm confused!!! I'm just wondering if that's a murine virus. Does anyone know? ;)

I'm fed up with the Catch 22 nature of "Sorry, there is no cure or known cause, so we won't bother even looking for one" excuse. Bless WPI for not using that tired old saw and trying to DO something, instead.

Thanks for letting me blow off some steam, guys. Didn't mean to hijack your blog, Justin. Sorry.
Please hijack it again. great comment.
 

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