CAA is Listening

[starryeyes]

How much does it cost to Delete the SPARK! pages and the Toolkit?

 

[Kati]

On top of CAA, it seems that CDC is in a "rebuilding" phase, or at least I hope. With a new leadership, I would have hopes that CAA and CDC could build on strength and work on common goals. We have yet to hear from CDC. Their website has not been updated, so I wonder what they are up to, if anything?

 

[starryeyes]

The CAA 12 Step CFS Toolkit is at
http://www.cfids.org/sparkcfs/2008/toolkit4.pdf
and when you click on it you're first greeted by Reeve's face. Then when you search for CBT (Cognitive Behavior Therapy) it says:

"The goal of CBT is to help patients cope with their illness and change perceptions and behaviors that can contribute to symptom expression."

"For CBT to be effective, the patient must believe in the potential benefits of this therapy."

It goes on:

"While CBT is frequently prescribed as a coping strategy, it can also improve fatigue and activity levels. Optimally, CBT can help your patients better adapt to the impact of CFS and improve their quality of life."

"Some patients are resistant to this therapy because they mistakenly believe health practitioners who prescribe CBT believe CFS is purely a psychological illness."

"Educating patients about the role CBT can play in helping them learn to manage activity levels, stress and symptoms may help overcome this reluctance."

"CBT practitioners can lead individual patients to understand how their behavior is impacting the illness and set up activity and exercise programs that are therapeutic."

Further down the page it says:

"Of the CFS treatments studied to date, two have demonstrated the most promise thus far. The first is activity management/graded exercise. The second is CBT. "

These quotes are on the page right next to a large picture of Suzanne Vernon, PhD.

"CFS patient can examine beliefs, concerns and coping behaviors..."

CBT is listed a lot more than this throughout this 12 page document. In fact, the whole document appears to be riddled with this inaccurate and harmful belief that CBT and GET can actually help us.

I do hope everybody understands that Graded Exercise Therapy (GET) is part of CBT. Part of our supposed "wrong beliefs" about CFS is that exertion makes us worse. When you're in a CBT program, you will be expected to push through your crashes and do more than you really should and you will be expected to do some kind of exercise and to be increasing it as time goes on.

From the CAA Toolkit: "CBT often involves the introduction of very slowly increased physical activity."

"Even people with extremely limited tolerance can be helped to gradually achieve increased strength and conditioning."

"Careful patient adherence to CBT protocol is critically important to successful therapy."

The final clincher is when the CAA tells our doctors: "Learn more by visiting www.cdc.gov/cfs"

The CAA is teaching doctors and other medical personnel that we need CBT and by default, GET in order to get better. The CAA is responsible for harming patients and exacerbating CFS in many patients. This is wrong. The CAA needs to either Delete this CFS Toolkit or overhaul it and take out all of the lies they are perpetuating about CBT and GET in CFS.

In order to quickly find the parts of the pamphlet that speak about CBT, go to the pamphlet and then click on Ctrl and hit the F key at the same time and a Search Box will pop up. Type "CBT" into the Search Box and click on the right arrow. This will bring you to the first "CBT" in the text. Click on the arrow again and again and it will continue to take you to all of the subsequent times "CBT" is written.

The CAA 12 Step CFS Toolkit is at
http://www.cfids.org/sparkcfs/2008/toolkit4.pdf

I ask again, how much does it cost to remove these materials from the web? More importantly, does the CAA want to remove these medical educational materials from the web? Is the CAA listening?

 

[Stuart]

On top of CAA, it seems that CDC is in a "rebuilding" phase, or at least I hope. With a new leadership, I would have hopes that CAA and CDC could build on strength and work on common goals. We have yet to hear from CDC. Their website has not been updated, so I wonder what they are up to, if anything?

Well Kati, it appears that the CDC is busy funding a fraudster to fake research to support the idea that vaccines have nothing to do with Autism.

http://www.huffingtonpost.com/robert-f-kennedy-jr/central-figure-in-cdc-vac_b_494303.html

Having paid this fraudster $14.6 million in the last eight years ($2M he embezzled, gee pretending to do research? Has that happened at the CDC before?), looks like the Dutch caught him double dipping, found some emails showing the CDC incahoots (nope can't plead victims of fraud now!).

Now it seems the result is direct harm to patients, because due to this disinformation campaign the government has ruled that the evidence shows vaccines to be harmless in relation to Autism. Oh, and it wasn't just any court, it is the special "vaccine court!"

http://www.foxbusiness.com/story/sp...rogram-deny-justice-vaccine-injured-children/

If it is possible that MuLV's have tainted vaccines, could ME be under cover up as well? Is this why the British Medical Research Council (MRC) has ME records under a 70 year "Official Secrets" classification until 2071?

 

[kurt]

The only way the public can influence medical policy is to fund compelling and scientifically strong private research. The WPI is a great example of that. Their study initiated work at HHS.

AIDS, Alzheimers, MS, asthma, autism, all types of rare diseases, many illnesses have had strong and supportive medical policy due to public pressure, before the scientific evidence was fully developed.

I don't think having a special ME/CFS episode of House, or ER is going to influence doctors, researchers, or the powers that be. My best friend is a doctor, my brother in law is one too. They literally roll their eyes at these types of shows.

I agree, but the medical community is not the media target here, my point was that media can influence the PUBLIC, and that can turn into new 'political correctness' which can work to the benefit of the media's favorite issues. Don't underrate the subtle psychology in this, the media influences the public who then puts pressure on policy-makers who can force changes in medical policies by law. Yes, in an ideal world strong science would make our case. But we just do not have that yet and I don't think we need to hold ourselves hostage waiting for a super-strong scientific case for CFS. There is more than adequate evidence in the millions of sick people and the existing research base. There is probably better evidence right now for CFS than there is for other illnesses that are far more socially accepted.

Consider that the SSA pays out in the neighborhood of $1.5 billion in disability payments for CFS, while we get less then $10 million yearly in federally funded research? It makes no sense. There's medical political bias, and I'm going to speculate that there's surely some nefarious lobbying by insurers going on too.
The only way to sort this out, again, is strong evidence based studies showing biological impairment in CFS, that's what doctors and researchers care about -- not television medical dramas!!
While I am horrified that Peter "CFS patients are the least deserving" White was quoted in the CAA literature, the research program actually has potential to influence how CFS is viewed medically. That's a much better use of funds than PR consultants.

Interesting comment on the SSA. Maybe we should ask the SSA for some research funding for CFS, they might actually be the largest financial beneficiary of a treatment that got CFS patients off disability. I would be first in line for that.

The PR leads to more funding which will lead to the eventual cure. I seriously doubt that a cure for CFS will be found unless hundreds of millions of $$ are spent EVERY YEAR for many years in research. That is what is required for this level of illness, based on experience with other conditions. We clearly have a complex neuro-immune disorder as well as some other co-morbid conditions and may need some basic research funded. The technologies to study complex neurological impairments are just barely emerging. Without good PR we might never gain the critical mass needed to solve this, I am a realist, or try to be, and while I would love to see a sudden end to CFS, a silver bullet cure, so far that has not happened so why not build a case for serious funding? IF many episodes of TV dramas are part of changing the public image, then let's get writing! That is probably a much cheaper way to change the public image than a direct advertising campaign. But I would agree with your point that we do not want to rob research funding for PR, yes, new resources are needed, maybe should be recruited, for that type of effort.

 

[starryeyes]

Why do I blame the CAA for miseducating our doctors and for failing to change the name "CFS"? See below. We need to understand the history of the CME packet in order to understand why it's so dangerous to us.

Background to the history of the CAA's CME (Continuing Medical Education Credits):

http://www.ncf-net.org/forum/EducationProjectTreason.html

Excerpts about the CAA Continuing Medical Educational Program for our Doctors:

It is medical recklessness that furthers misinformation in a crafty way by seemingly trying to "educate."

The project got underway, officially, in October of 2000 with thousands of dollars given to the CAA to help it along and make sure that the CAA fell within the federal's CDC misinformation arena.

Attending a session will enable the physician to learn some misinformation about CFS along with helping to fulfill the requirements of CMEs.

In addition, the CAA gets to exhibit the material at medical meetings by setting up educational booths where the misinformation can be spread further.

With additional funding, the CAA is now producing an educational video to spread this misinformation even further to physicians who do not have an opportunity to attend a local training session or have internet access.

An overview of CFS says the illness "is characterized by...multiple nonspecific symptoms."

No mention of swollen lymph nodes or low-grade fevers in the overview. They must be too specific.

What this committee was trying to accomplish was apparent to several of those on the committee. One, an infectious disease specialist from Harvard Medical School, said "Is the intention to create a new psychiatric classification?" He, along with other members of the committee, quit rather than sign on to the trivializing name.

While this "education project" goes on to state that "the nation's Surgeon General, Dr. David Satcher, has agreed that the term CFS is no longer appropriate," the CAA has been the one enduring blockade to seeing this accomplishment for years.

They state "It is unclear if CFS patients have abnormal cortisol
levels." In fact, the NIH tried to prove this was a mental illness by looking for high levels of cortisol. Instead, they found low or low-normal levels. So they refused to publish!

And one of these is that the prevalence of children. The NIH refused to fund Dr. Leonard Jason to go on to study this. But he still went on and did a study on kids and found that the rate was about half of that in adults but rather even in gender.

the CAA say "it is important to direct careful attention to family functioning to identify and address underlying family problems or psychopathology that may be contributing to symptoms." Not only has the invalid and cruel label of "Maunchausens-by-proxie" been unfairly put upon parents trying to get help for their sick children, but this document quite obviously gives support to this crime.

How many more children are going to be removed from their homes and families because they are stricken with CFS?

These physicians suggest so little testing that if this packet is for the purpose of making sure the patient never gets disability, it's reached its goal.

They even say "The presence of severe objective muscle weakness, neurological signs, or cardio-respiratory disease might indicate other conditions."

Lest anybody come away thinking CFS could probably be a serious illness, they again point out that "CFS is not terminal, but suicide is a choice that some persons make with CFS..."

 

[Gerwyn]

Why do I blame the CAA for miseducating our doctors and for failing to change the name "CFS"? See below. We need to understand the history of the CME packet in order to understand why it's so dangerous to us.

Background to the history of the CAA's CME (Continuing Medical Education Credits):

http://www.ncf-net.org/forum/EducationProjectTreason.html

Excerpts:



















How many more children are going to be removed from their homes and families because they are stricken with CFS?

This is part of the CAA toolkit regarding CBT

◆ "The short-term studies of CBT in CFS show improvement in
function and symptom management."

" Some studies also show
limited effect on pain and fatigue. " Absolute bull there have never ben any studies on a homogenous ME/CSF population showing this.


◆" All people monitor, in their brains, the biochemical signals
that reflect ongoing bodily processes. Responses to these
signals occur at both conscious and unconscious levels. "

What planet are they on! you cant conciously monitor biochemical signals.monitoring is not done by people at all.

To say that monitoring is done by people at all conciously or otherwise is a fallacy and hugely misleading

.Every person in the world has inbuilt processes for monitoring and regulating their biochemisry.

To say that people do it is total nonsense.


"When the conscious responses prevail, they may be either
helpful or harmful. CBT assists the patient in responding to
the illness in a positive manner " -----if that isnt implying psychological causation i dont know what does




◆" Psychiatric factors are relevant to any illness process." total and absolute codswallop.The term psychiatric has a very precise meaning

 

[shiso]

Before my ramble, I'll start with full disclosure about my personal stance about the CAA. I basically support the CAA (and donate what I can when I can) for 2 reasons.

The first reason is a reason I feel good about: I think they've done some good things recently (in particular in the research area), and I believe that their shortcomings do not cancel out the good. The second reason derives from what I see as an unfortunate reality and an exercise in hope: I would like to see a national-level ME/CFS advocacy/research/educational organization accomplish big things; and while the CAA may not be that organization now, I do not see any alternative out there with both the experience and the POTENTIAL to be that organization (with now as the starting point).

That being said, I agree with the substance of almost all of the criticism that people have voiced, e.g., I agree 100% about the harmfulness of having outdated literature about GET on their website (the face of the organization), and likewise about representing the most severely affected. We know Ms. McCleary knows about the dire physical, social, and financial situations many patients are in, we know many of the Board members are deeply personally affected - and yet, the point is that we are not able to see that stark reality readily represented in the CAA's online literature.

I think one thing I've learned from these discussions concerning the CAA (and which is also evident by even a cursory look at CAA's public materials regarding their staff size and budget) is that while it may be the most visible national level organization for ME/CFS, it is a very small organization in the scheme of things. There is a disconnect between the CAA appearing to be the leading, national organization for the disease (and holding itself out as such), on one hand, and how much it is actually capable of logistically accomplishing given its smallness, on the other.

But as long as the CAA holds itself out as the leading organization committed to making advances in research, advocacy, and education, the CAA will predictably fall short of patients’ expectations in one or all of these areas. There will always be legitimate shortcomings that patients will be perfectly justified in pointing out (and I'm grateful there have been avenues of communication to do just that, like the ones that led to the removal of that awful Alex Howard article), and there will always be a legitimate defensive argument that Ms. McCleary, Dr. Vernon, their 6 (or so) staff members and the Board of Directors are talented, dedicated people that are accomplishing a lot in light of their limited size and resources.

This is simply because in order to get the kind of results we want, there is a need for exponentially more resources in all of these areas than what is currently available to the CAA, WPI, and other privately funded organizations, and what the federal government is currently spending on this disease combined.

The reality is that the CAA cannot possibly accomplish what they say they are working to accomplish or what we each want even if Kim McCleary pulled multiple all-nighters a week. That is why, as much as I approve of their forays into funding research that no one else is funding, my wish is for the CAA to focus more on advocacy: the kind of super smart, super aggressive, out of the box advocacy that will lead to the kind of attention, money and resources that other diseases like MS and Parkinson's have, from private donors, federal funding (MS is allotted something like $150 million in NIH grants and CFS $3 or $4 million), and big pharma. There's no reason this has to be a pipe dream.

I understand the CAA's current answer to this problem is that it costs money to hire expensive PR/lobbying consultants to get this done which it simply doesn't have, but I don't see that as a satisfactory answer - not in the context of assessing whether the CAA is making good budgetary decisions or whether Ms. McCleary is doing a good job under the circumstances, but in a broader context of advancing our common goal of seeing real medical, physical, scientific progress for this disease within our lifetimes - something the CAA explicitly purports to be trying to accomplish.

Unless we luck out and XMRV is the end all and be all that leads to the answer to all problems for all patients, and that the government and research institutions will voluntarily see to it themselves that funding for ME/CFS (as opposed to just XMRV) is exponentially increased, given the painfully slow pace of science, I just don't see this goal being met unless the government and/or big pharma are forced to add serious digits to the puny amounts spent on this disease.

On a final note, i.e. apart from my fantasy that the CAA will find a way with their existing staff or hire the right people to catapult ME/CFS to the same ranks as MS with respect to funding and research, not all advocacy efforts have to cost a lot of money. For example, I find it hard to grasp that it would be prohibitively expensive to assign one smart staff member or capable volunteer Board member over a few weeks to the project of overhauling outdated informational material on the CAA’s website (e.g., re CBT and GET) and to more visibly depict the reality of severely disabled patients.

It would certainly be an encouraging sign to supporters and would-be supporters that the CAA is listening, and evolving/willing to change its conservative style with the times (and the urgent needs of patients).

 

[oerganix]

Very well said, Shiso.

CAA is never going to have the money to fund research in the way that is needed. We need an advocacy organization to go after the kind of funding these other diseases, like MS or even polio, are already getting.

I would hope that if the focus of CAA turned to advocacy, and not research, they would be able to stop covering their behinds (fence straddling) in response to research that comes out. They don't have to tell us whether each study is true or not. They just need to advocate for MORE RESEARCH, over and over again, until we get the kind of research efforts that other diseases have gotten.

To this end, focusing a lot more on the 25% sickest would add to that strategy, IMO. As someone else said, focusing on the sickest 25% would not exclude the other 75%....and we need to remember that even those in the 'wellest' 75% can slip into the other 25% very quickly and almost without warning. It only takes one disastrous event that is not handled well, by others or by the PWC.

I would also like to see more stories or interviews with people who are getting treatments that allow them to work, such as the Dr I have mentioned before, who flies twice weekly to Nevada for Ampligen....and has been able to continue working as a doctor.

 

[oerganix]

How much does it cost to Delete the SPARK! pages and the Toolkit?

Thanks for keeping your teeth into this, teejkay!

first, DO NO HARM!

 

[Orla]

Originally Posted by Cort
Is GET still so crazy that it asks you to push through your symptoms and your crashes? If so then it should be banned. I had thought that GET was more like - slowly, very slowly increase your activity levels - so long as you don;t flare up. I thought it had evolved into something more like PACING actually.

<snip>

* The above is my underline

This is where I think advocacy can go off the rails. Why keep recommending GET if what we really mean is pacing? Stop making things more difficult than needed. Stop asking your audience to appreciate a nuanced (confused) version of a loaded recommendation. Simpler, not more complex!

I think this is a very important point. Graded Exercise means Graded Exercise and not something else. People who don't have ME/CFS do graded exercise for other medical reasons. In some cases GET for these conditions is going to mean pushing through symptoms a little, or feeling worse while doing it (even quite bad sometimes), but this is fine for them as they improve as they go on because do not have the same reaction to exercise as we do. We have an abnormal response including a delayed recovery from activity, and the delay in how bad you feel after doing something, so you don't know the full damage until afterwards (I am talking about the thing were if you feel bad while doing it you feel a million times worse the next day).

On top of this, the crowed that push GET for ME/CFS think that our "symptoms" are a mixture of our imagination (or as they would say, abnormal perceptions of normal bodily sensations), deconditioning, and stress. So they also encouage a push through, and sticking to the programme as much as possible, no matter how you feel. And there is this obsession with timetables and plans and levels, so if you get worse the whole focus is on getting back up to a previous level, which may not be possible, instead of learning to live within ones limits. This can be distressing for the patient and make them feel like a failure.

There are varying degrees of aggressiveness in their approaches depending on practitioner and patient, but it all basically boils down to the same thing. Of course sometimes the medical practitioner can bend to the reality of the situation and basically "allow" the patient to pace, but still cling to the myth that the patient is doing GET. As well as this, many patients say they are doing GET when they are really pacing, as they reduce activity levels depending on how they feel (so pacing and not GET, as it is not graded exercise).

Importantly the British Psychological Society have pointed out that "there is no evidence that GET (with or without CBT) actually increases activity levels. Where objective measures have been employed, the increments in activity levels have been negligible and no greater than that seen in controls". British Psychological Society submission to the NICE Guideline Development Group, 2006.

[Edit, I meant to say that looking at the sort of data that they are talking about, it indicates that patients are either not doing their programme when they say they are (because of pressure on them, not because they are wanting to be dishonest), or patients do their walk but cut out other activities (so they think they are doing more as they are now doing exercise, but overall they are doing less), or over the time of the study they have learnt to pace themselves better, they might be managing better but are not actually doing more physical activity overall. There is no evidence from research that a GET programme actually increases activity levels, which is pretty astonishing.

This is worth look. Information from objective date from CBT/GET studies which had been published omitting this data (handy that! the original publications made it look like the programmes were effective). "CBT did neither cause an increase in physical activity at the end of treatment...nor was an increase in physical activity associated with a reduction in fatigue...."
http://listserv.nodak.edu/cgi-bin/wa...0&F=&S=&P=7916 ]

Kati has made a very important point also. In practice when you are dealing with someone on the ground, who has in their head that GET is the way to go, there is basically no reasoning with them. There is a power imbalance in the relationship between the patient and the medical people they deal with, so this is important to take into account also, and it is easy for the patient to seem uncooperative to medical people if you don't follow their recommendations.

 

[Navid]

This is such en educational thread. i really knew nothing abt cfid's when i became ill. when the docs first started dxing me w/cfids i refused that diagnosis because in my mind cfid's was a wastebasket, malingerer, lazy-person's syndrome. and as long as this was my dx there would be no hope for getting well.

why was this my opinion of an illness i knew nothing about?...media coverage: "yuppie flu", the way my docs presented it to me. Truthfully in the beginning, i used to wish i had cancer...at least people would accept i was really sick and there were treatment options...now i'm glad i don't have cancer...and i don't ever want cancer.

(when i was given a lyme diagnosis i was happy...ahhh here is a disease that can be treated. but after 2 years of iv abx and only becoming sicker...i realized either i didn't have lyme or the tx just did not work for me.)

just since being on this board i'm learning about the CAA. the things i've read on this thread illuminate why i was treated the way i was by the mainstream docs i saw...this is what the docs are taught about the disease...from the disease's advocacy group!!!!

""CFS patient can examine beliefs, concerns and coping behaviors..."

right, when i can barely walk, talk, eat, stand.....i want to stop and examine my beliefs and coping behaviors....NO, I want to walk, talk , eat, stand, run, care for my child again and that's not going to happen by examining my beliefs and coping behaviors!!!!

it's only when you move out of mainstream medicine and start to pay big bucks to see lyme docs, integrative/functional med docs, cfid's specialists that you start to get the viral, bacterial, hormonal tests that may bring about some forms of treatment beside anti-depressants and sleep meds...then your illness is finally taken seriously...but i must say even then, after spending $100,000's there still is really no treatment.

but oh how much easier it would have been on my mind, body, spirit and pocketbook if my PCP, Infectious Disease Doc, Neurologist, Endocrinologist, ENT, Rheumatologist, Cardiologist..etc....had been the one to run the viral/bacterial, hormonal tests...rather than me having to travel around the country spending precious energy and time to finally get validation that YES you are really and truly physically ill.

Now that I understand how it all works...i'm just waiting for a virologist to crack the code on how and why we have all these viruses running havoc thru our system and how can we treat them without killing ourselves in the process.

Or how about some stem cell clinical trails for CFID's/ME patients here in the US...there doesn' seem to be too much risk to the therapy and there have been small numbers of patients reporting improvement...why not give them a shot here.

Why isn't the advocacy group working toward these things..real medical treatments!!!!

sorry for the rambling post. it's good to be amongst "friends"

 

[oerganix]

Lisag said:
"Now that I understand how it all works...i'm just waiting for a virologist to crack the code on how and why we have all these viruses running havoc thru our system and how can we treat them without killing ourselves in the process.

Or how about some stem cell clinical trails for CFID's/ME patients here in the US...there doesn' seem to be too much risk to the therapy and there have been small numbers of patients reporting improvement...why not give them a shot here.

Why isn't the advocacy group working toward these things..real medical treatments!!!!"

I so agree! I keep hearing that 'we don't know what causes this and so we can't treat it'. BUT there are people getting treatments that are working for them, so why not start there and work backwards? Stem cell treatments are working, at least for awhile - no long term data yet available, so why isn't there a big research project in the works, recruiting patients for this? Ampligen is working for at least some people. Why aren't there much larger studies going on around this? On another thread, there is a machine, something like a dialysis machine, that removes virus and other 'bad bugs' from the blood. Why aren't there any trials using this for ME/CFS? All, or nearly all, the docs who have been seeing CFS patients for decades have said that a viral cause "fits", so lets get some viral cause treatments going, so that one of these years, not every treatment can be labeled 'experimental' and denied to everyone who relies on insurance for their health care.

 

[jspotila]

Research is the Answer

Several posters have very eloquently made the case for research as the foundation for changing public and physician perceptions of CFS. This is the Association's strategy (bold is mine):

To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.

We have found that the press is only interested when there is something new. XMRV is a case in point: that got the press interested because it was big and it was new. Coverage has fallen since then, with blips for the UK and Dutch studies. So new research findings, are the way to get the press attention (or scandal, or controversy, but you get my point).

I think it was Kurt who said earlier in this thread that hundreds of millions of dollars will be needed every year to solve this disease. The federal government and pharma are the only sources for that kind of money, so in addition to pursuing the prongs of our research program, we try to open big purse strings whenever we can.

The Association works with B&D Consulting to open the door to members of Congress (24 meetings beginning of this month to present appropriations language), and people at DHHS, CDC and NIH. We can't pay for much, by "inside the beltway" standards. At every CFSAC meeting, Kim McCleary and a few Board members testify about the "burden of illness" (a buzzword) and the dire need for more federal funding for research. We say it every time and everywhere we can.

Here's a calculation that I've used recently based on lost productivity estimates. We know that CFS costs each patient approximately $20,000 a year in lost productivity (from a 2004 study), $9.1 billion a year. NIH spent $5 million on CFS research in 2009 (source: http://report.nih.gov/rcdc/categories/). In other words, the NIH invested $5 per person with CFS.

For comparison, look at diabetes. The CDC estimates that 24 million Americans have diabetes, and that the indirect costs of disability and lost productivity total $58,000,000,000 per year. NIH spent $1,030,000,000 on diabetes research in 2009 - $42.92 per patient. The NIH investment in diabetes research is 1.8% of the estimated lost productivity, compared to a rate of .05% of the lost productivity due to CFS.

When you add the costs of healthcare and disability payments to the lost productivity number, the ratios are even worse. This is the "burden of illness" I mentioned above. I've testified on this to the CFSAC, and the Association uses this info in its conversations with staffers and agency employees.

 

[starryeyes]

Thank you for pointing out the disparity of the money spent per patient in CFS vs. other illnesses like diabetes, Jennie. I really appreciate that you are spreading awareness about this issue.

 

[kurt]

Before my ramble, I'll start with full disclosure about my personal stance about the CAA. I basically support the CAA (and donate what I can when I can) for 2 reasons.
....

That was a very logical post shiso! I think the points you raised could be the substance of a very useful and productive discussion about what patients would like to see in a leading national advocacy group and campaign.

In practice when you are dealing with someone on the ground, who has in their head that GET is the way to go, there is basically no reasoning with them. There is a power imbalance in the relationship between the patient and the medical people they deal with, so this is important to take into account also, and it is easy for the patient to seem uncooperative to medical people if you don't follow their recommendations.

This is such a problem, GET and CBT are basically 'bread crumbs' being given to us, taken from other conditions. These treatments do work and help in some other diseases, particularly psychiatric. So the practitioners become psychologically conditioned themselves, believing that patients who cooperate are generally helped, and fail to differentiate CFS patients from patients with totally different conditions who in fact are often helped by these therapies. This is simply a mistaken identity problem, taken to an extreme, because we have no real public identity. Name recognition, 'oh I've heard of CFS' is not an identity.

Ironically, I think there probably could be a safe way to design a special approach to these types of therapies for someone with CFS, we do need some basic mobility and do need to work through any internal stress-causing problems, but only as coping skills. And the strategy and practitioner would have to work within the rational limits of the client. Finding your exercise limit is very useful, that helps with pacing and calculating energy for us should be like a diabetic calculating sugar intake, something to carefully monitor. (which is actually evidence we have a mitochondria problem, but that is another topic)

We have found that the press is only interested when there is something new. XMRV is a case in point: that got the press interested because it was big and it was new. Coverage has fallen since then, with blips for the UK and Dutch studies. So new research findings, are the way to get the press attention (or scandal, or controversy, but you get my point).

I would not say research press releases are the ONLY way to get attention, that is just one of the better ways. But what to do when there is no new research? Or when the most important break-through is to put all the pieces of the puzzle together, nothing new, just figuring out what the existing research base is really saying about CFS? Then we need other ways to get our message across.

Relying solely on research breakthroughs for PR is a BIG mistake in my view, because research is such a roller-coaster ride. Nice when it happens but I think we need a backup plan for attracting the types of major funding that will be needed. Like the economic numbers you gave, that can be turned into a compelling case for funding. Combine that with some powerful special interest stories, maybe some celebrities, and make the case properly, and the public's attention CAN be won. Maybe that is a different problem to solve than research and maybe CAA should not try to be everything here, very difficult for a small organization to wear too many hats. Developing public PR literature, direct media campaigns, Doctor education, political advocacy, directed research, fund-raising, patient education, database construction, representing patients in major CFS meetings, each different problems and even large organizations often specialize in just one or two of those.

Patients are still sick, and we have some 'open wounds' in terms of the public and medical view of CFS, we lack equitable funding, are often denied basic human rights. We can not wait for research successes to solve these problems.

 

[starryeyes]

*Applause*

I totally agree Kurt, Orla, Shiso, Jennie, Dr. Yes, Koan, Kati, Kit and all of the others who have made great points in this thread. And it's great to see Cort looking more into these materials and acknowledging what we're saying. :Retro smile:

 

[Cort]

I am with Teej in areas where CBT is given too much prominence as in the Sparks document. I am not with you when you mischaracterize the research. The Sparks section on CBT was for the most part, correct. The problem was that it dominated the document. I know you can argue with the results/methodology of any one study but the broad array of studies, and there have been quite a few of them, indicate that it can be helpful.

I don't know why that doesn't bother me as much as many of you. I think sympathetic nervous system activation, fight and flight response turned on, and therapies designed to reduce the stress of a very stressful disease SHOULD work. Who is ready to have a disease with no cure stop their life dead in its tracks? I can understand people getting angry with anyone suggesting that CBT is a cure or that is highlighted too much but several people are stating you can't mention it in any context (except that its a harmful therapy) and that just doesn't follow the science.

Honestly that really irks me.. I see studies showing that it can help and then patients emphatically stating that that is not true (and then slamming the CAA over the head for reporting the results of treatment studies!).

Have we gotten to the point where you can't even say it helps some people with their fatigue even after studies suggest it does? That's a pretty darn mild statement. It can't even be an adjunct to a more comprehensive treatment program? Nancy Klimas cannot say it helps patients with symptoms? Is she going to be the next on the CFS hit list after the CAA? Logically she should be. So should Dr. Jason - who has CFS - but who recently did a study showing that behavioral and other stress reduction therapies did improve quality of life - improved their symptoms - but in no way cured.

CBT is here and its going to be here. My guess is that it'll be playing a more and more minor role in the treatment discussion I think the research community is realizing that it has definite limitations. Broad overviews of treatment studies are indicating that. In my overview of the Reno conference I noted that a CBT practitioner got up and said its been overhyped; she did not say it did not have some positive benefits for at least some patients.

I think the CFS community instead of wasting its time arguing that CBT does not help should spend its time arguing that it does not help ENOUGH. That we've spent 10 or 15 years studying it and we know its positive points and its negative points and its time to move on. That's the CAA's stance actually.

CBT needs to be put in the right context; a help that in no way results in a cure. The Sparks document doesn't say it does but it doesn't define its limitations within the overall context of disease severity well enough. That's my problem.

Basically we need more research into treatments that are more effective -that are really effective. That should be the focus, I believe, finding treatments that are really effective. The scientific community is not going to turn its back on CBT no matter how much patients scream. It can, however, modulate its approach and starting looking elsewhere.


Some recent positive studies below

J Affect Disord. 2009 May;115(1-2):280-6. Epub 2008 Oct 19.
Salivary cortisol output before and after cognitive behavioural therapy for chronic fatigue syndrome.
Roberts AD, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ.

King's College London, Institute of Psychiatry, Department of Psychological Medicine, De Crespigny Park, London SE5 8AF, UK.
BACKGROUND: There is evidence that patients with chronic fatigue syndrome (CFS) have mild hypocortisolism. One theory about the aetiology of this hypocortisolism is that it occurs late in the course of CFS via factors such as inactivity, sleep disturbance, chronic stress and deconditioning. We aimed to determine whether therapy aimed at reversing these factors--cognitive behavioural therapy for CFS--could increase cortisol output in CFS. METHODS: We measured diurnal salivary cortisol output between 0800 and 2000 h before and after 15 sessions (or 6 months) of CBT in 41 patients with CDC-defined CFS attending a specialist, tertiary outpatient clinic. RESULTS: There was a significant clinical response to CBT, and a significant rise in salivary cortisol output after CBT. LIMITATIONS: We were unable to control for the passage of time using a non-treated CFS group. CONCLUSIONS: Hypocortisolism in CFS is potentially reversible by CBT. Given previous suggestions that lowered cortisol may be a maintaining factor in CFS, CBT offers a potential way to address this.

This overview shows it helped relieve fatigue symptoms in 40% of patients.

Cognitive behaviour therapy for chronic fatigue syndrome in adults.
Price JR, Mitchell E, Tidy E, Hunot V.

Department of Psychiatry, University of Oxford, Warneford Hospital, Headington, Oxford, UK, OX3 7JX. jonathan.price@psych.ox.ac.uk
Comment in:

Evid Based Ment Health. 2009 Feb;12(1):16.
Update of:

Cochrane Database Syst Rev. 2000;(2):CD001027.
BACKGROUND: Chronic fatigue syndrome (CFS) is a common, debilitating and serious health problem. Cognitive behaviour therapy (CBT) may help to alleviate the symptoms of CFS. OBJECTIVES: To examine the effectiveness and acceptability of CBT for CFS, alone and in combination with other interventions, compared with usual care and other interventions. SEARCH STRATEGY: CCDANCTR-Studies and CCDANCTR-References were searched on 28/3/2008. We conducted supplementary searches of other bibliographic databases. We searched reference lists of retrieved articles and contacted trial authors and experts in the field for information on ongoing/completed trials. MAIN RESULTS: Fifteen studies (1043 CFS participants) were included in the review. When comparing CBT with usual care (six studies, 373 participants), the difference in fatigue mean scores at post-treatment was highly significant in favour of CBT (SMD -0.39, 95% CI -0.60 to -0.19), with 40% of CBT participants (four studies, 371 participants) showing clinical response in contrast with 26% in usual care (OR 0.47, 95% CI 0.29 to 0.76). Findings at follow-up were inconsistent. For CBT versus other psychological therapies, comprising relaxation, counselling and education/support (four studies, 313 participants), the difference in fatigue mean scores at post-treatment favoured CBT (SMD -0.43, 95% CI -0.65 to -0.20). Findings at follow-up were heterogeneous and inconsistent. Only two studies compared CBT against other interventions and one study compared CBT in combination with other interventions against usual care. AUTHORS' CONCLUSIONS: CBT is effective in reducing the symptoms of fatigue at post-treatment compared with usual care, and may be more effective in reducing fatigue symptoms compared with other psychological therapies. The evidence base at follow-up is limited to a small group of studies with inconsistent findings. There is a lack of evidence on the comparative effectiveness of CBT alone or in combination with other treatments, and further studies are required to inform the development of effective treatment programmes for people with CFS.

Grey matter volume

Increase in prefrontal cortical volume following cognitive behavioural therapy in patients with chronic fatigue syndrome.
de Lange FP, Koers A, Kalkman JS, Bleijenberg G, Hagoort P, van der Meer JW, Toni I.

F.C. Donders Centre for Cognitive Neuroimaging, Radboud University Nijmegen, Kapittelweg 29, 6500 HB Nijmegen, The Netherlands. florisdelange@gmail.com
Comment in:

Brain. 2009 Jun;132(Pt 6):e110; author reply e111.
Chronic fatigue syndrome (CFS) is a disabling disorder, characterized by persistent or relapsing fatigue. Recent studies have detected a decrease in cortical grey matter volume in patients with CFS, but it is unclear whether this cerebral atrophy constitutes a cause or a consequence of the disease. Cognitive behavioural therapy (CBT) is an effective behavioural intervention for CFS, which combines a rehabilitative approach of a graded increase in physical activity with a psychological approach that addresses thoughts and beliefs about CFS which may impair recovery. Here, we test the hypothesis that cerebral atrophy may be a reversible state that can ameliorate with successful CBT. We have quantified cerebral structural changes in 22 CFS patients that underwent CBT and 22 healthy control participants. At baseline, CFS patients had significantly lower grey matter volume than healthy control participants. CBT intervention led to a significant improvement in health status, physical activity and cognitive performance. Crucially, CFS patients showed a significant increase in grey matter volume, localized in the lateral prefrontal cortex. This change in cerebral volume was related to improvements in cognitive speed in the CFS patients.Our findings indicate that the cerebral atrophy associated with CFS is partially reversed after effective CBT. This result provides an example of macroscopic cortical plasticity in the adult human brain, demonstrating a surprisingly dynamic relation between behavioural state and cerebral anatomy. Furthermore, our results reveal a possible neurobiological substrate of psychotherapeutic treatment.

CBT plus a Drug

Br J Psychiatry. 2008 Mar;192(3):217-23.
Cognitive-behavioural therapy v. mirtazapine for chronic fatigue and neurasthenia: randomised placebo-controlled trial.
Stubhaug B, Lie SA, Ursin H, Eriksen HR.

Division of Psychiatry, Haukeland University Hospital, N-5021 Bergen, Norway. bjarte.stubhaug@helse-bergen.no
BACKGROUND: Single interventions in chronic fatigue syndrome have shown only limited effectiveness, with few studies of comprehensive treatment programmes. AIMS: To examine the effect of a comprehensive cognitive-behavioural treatment (CCBT) programme compared with placebo-controlled mirtazapine medication in patients with chronic fatigue, and to study the effect of combined medication and CCBT. METHOD: A three-armed randomised clinical trial of mirtazapine, placebo and a CCBT programme was conducted to investigate treatment effect in a patient group (n=72) with chronic fatigue referred to a specialist clinic. The CCBT programme was compared with mirtazapine or placebo therapy for 12 weeks, followed by 12 weeks treatment with a mixed crossover-combination design. Assessments were done at 12 weeks and 24 weeks. RESULTS: By 12 weeks the treatment effect was significantly better in the group initially receiving CCBT, as assessed with the Fatigue Scale (P=0.014) and the Clinical Global Impression Scale (P=0.001). By 24 weeks the treatment group initially receiving CCBT for 12 weeks followed by mirtazapine for 12 weeks showed significant improvement compared with the other treatment groups on the Fatigue Scale (P<0.001) and the Clinical Global Impression Scale (P=0.002). Secondary outcome measures showed overall improvement with no significant difference between treatment groups. CONCLUSIONS: Multimodal interventions may have positive treatment effects in chronic fatigue syndrome. Sequence of interventions seem to be of importance.

Adolescents

Efficacy of cognitive behavioral therapy for adolescents with chronic fatigue syndrome: long-term follow-up of a randomized, controlled trial.
Knoop H, Stulemeijer M, de Jong LW, Fiselier TJ, Bleijenberg G.

Expert Centre Chronic Fatigue, Radboud University, Nijmegen Medical Centre, Postbox 9011, 6525 EC Nijmegen, The Netherlands. j.knoop@nkcv.umcn.nl
OBJECTIVES: The purpose of this work was to assess the long-term outcome of adolescents with chronic fatigue syndrome who received cognitive behavioral therapy and to determine the predictive value of fatigue severity and physical impairments of the adolescent and the fatigue severity of the mother at baseline for the outcome of the treatment at follow-up. PATIENTS AND METHODS: Sixty-six adolescent patients with chronic fatigue syndrome who previously participated in a randomized, controlled trial that showed that cognitive behavioral therapy was more effective than a waiting-list condition in reducing fatigue and improving physical functioning were contacted for a follow-up assessment. Fifty participants of the follow-up study had received cognitive behavioral therapy for chronic fatigue syndrome (32 formed the cognitive behavioral therapy group in the original trial, and 18 patients received cognitive behavioral therapy after the waiting period). The remaining 16 patients had refused cognitive behavioral therapy after the waiting period. The main outcome measures were fatigue severity (Checklist Individual Strength), physical functioning (Short-Form General Health Survey), and school attendance. RESULTS: Data were complete for 61 patients at follow-up (cognitive behavioral therapy group: 47 patients; no-treatment group: 14 patients). The mean follow-up time was 2.1 years. There was no significant change in fatigue severity between posttreatment and follow-up in the cognitive behavioral therapy group. There was a significant further increase in physical functioning and school attendance (10% increase). The adolescents in the cognitive behavioral therapy group were significantly less fatigued and significantly less functionally impaired and had higher school attendance at follow-up than those in the no-treatment group. Fatigue severity of the mother was a significant predictor of treatment outcome. CONCLUSIONS: The positive effects of cognitive behavioral therapy in adolescents with chronic fatigue syndrome are sustained after cognitive behavioral therapy. Higher fatigue severity of the mother predicts lower treatment outcome in adolescent patients.

 

[Cort]

These terrible statements!

"While CBT is frequently prescribed as a coping strategy, it can also improve fatigue and activity levels. Optimally, CBT can help your patients better adapt to the impact of CFS and improve their quality of life."

What a terrible thing to say: it can help your patients better adapt to the impact of CFS ; its not saying anything about curing it; it says adapt to the impact of it.

"Some patients are resistant to this therapy because they mistakenly believe health practitioners who prescribe CBT believe CFS is purely a psychological illness."

"Educating patients about the role CBT can play in helping them learn to manage activity levels, stress and symptoms may help overcome this reluctance."

Another terrible thing; managing activity levels (avoid push-crash cycles), managing stress - just terrible!...

"CBT practitioners can lead individual patients to understand how their behavior is impacting the illness and set up activity and exercise programs that are therapeutic."

I agree this sounds on its face pretty bad; but if you're pushing and crashing all the time then figuring out how to back off on that, is a pretty good idea - and that's what I believe CBT does, does it not?

This to my understanding is not true anymore.

When you're in a CBT program, you will be expected to push through your crashes and do more than you really should and you will be expected to do some kind of exercise and to be increasing it as time goes on.

"CBT often involves the introduction of very slowly increased physical activity."

"Even people with extremely limited tolerance can be helped to gradually achieve increased strength and conditioning."

"very slowly increased physical activity" - horrors! This is hardly different from Bruce Campbell's Self Help Course. First you find your proper activity levels (avoid push -crash phenomenon - that's behavioral) then you very slowly increase your activity levels. Dr. Jason says the same things. So does Staci Stevens.

This is mild stuff. What's bad is that there is no mention of other treatments for CFS.

 

[starryeyes]

Cort, if you read this whole thread you can see why we're so upset with the CAA. They're miseducating our doctors. Did you see the posts here on this thread by people like Kati and Kit? I've seen so many here express the reasons we feel this way far more eloquently and intelligently than I can like Dr. Yes, Kati, Stuart, oerganix, Gerwyn, justin, CBS, gracenote, Kurt, Robin, lily, parvo, Koan, jackie, lisag, Otis, rebecca and Islandfinn. I don't see how they could fail to get you to see the connections and the dire implications for all of us.

Perhaps, as you stated before, since you're not that bad off, having to do a CBT and GET program would be no big deal to you. For people like me, it could be extremely devastating. It already is actually. I've been treated horribly by doctors and by my LTD.