Discussion in 'General ME/CFS News' started by shrewsbury, Mar 4, 2010.
arnt they supposed to be on our side or am i missing something
I started the earlier thread to highlight what I thought were some useful points made by Alex Howard in the Art of Pacing article. Im the last person to be an apologist for Howard but what he says about stages of the illness and implications for how you manage it makes some sense to me and I havent seen this said in such detail before.
I wasnt posting the article in the anticipation that we would discuss the whole thing, or the basis for his approach, as I assumed that discussion would just be a repeat of all the previous ones weve had about these psychological approaches to treatment and weve debated them ad nauseum elsewhere.
That said, I do think his graph of recovery shouldnt be completely dismissed. It does seem that those people who do improve do so in the way the graph suggests two steps forward and one step back. There may only be a minority of people who actually recover, but this minority do often recover in the way shown in the graph. In 1989 I would have said I had recovered it took 7 years and that was definitely how it went.
The problem of course is that the way he writes implies that almost everyone recovers and we know thats not so. And this gives the outside world the impression that this is a self-limiting illness. Another problem is that he completely ignores the fact that many, if not most, even after recovery and long periods of good health, do relapse, and often this relapse is more severe than the initial illness. And as others have said on this thread, his and others focus on the mildly affected is damaging to those of us who are more severely ill.
is he a psychologist or a psychotherapist or perhaps a magician ,that graph came from thin air and he made the science vanish! yet more smoke and mirrors
Oh, this is so frustrating and painful.
While I know that back in 2004 when I knew next to nothing about ME and had my first bout, pacing was the only thing recommended by my doctor and I was left to my own devices to figure it out. I recovered ok and then had several years before my last relapse.
BUT I am quite grateful that nobody insisted my condition was psychological because I think that would have been totally unhelpful and actually set me back. Getting CBT or counselling was not really what I needed... I was very happy before I got sick. My fiancee and I had just gotten engaged, my work was going really well and I was living in a gorgeous house with friends that I loved.
Although with Mikovits suggesting that the XMRV virus is activated by stress hormones, I can see how that sort of data pops up in studies.
It saddens me that a fairly reasonable treatment that works for a minority of patients is being unfairly lumped in with a psychiatric basis for the condition.
Looking at that article they do base much of this on too much oxidative stress, damaged mitochondria...they take NICE to task - they are not Wessely or Peter White. They state there are times not to do anything..that doing too much has physiological consequences.
There are some parts that punch my buttons for sure. Its spoken a language that can irritating at times.
I think its kind of interesting how they blend everything together, though; physical and emotional and mental.
Gerwyn, I ask you to apply your fantastic scientific mind to the CFIDS Association Research program and tell me that they're not working for you. Are you willing to say that a group that does this kind of work is not on your side (see below)? That a group that has recently funded research into metabolic dysfunction (repeat exercise studies), HERV's, RNase L, orthostatic intolerance, EBV etc. is not on your side? Whose side does research like that place them on?
Dr. Gordon Broderick “Recalibrating flight or fight”
“Model-based therapeutic correction of HPA axis dysfunction”
Dr. Kathleen Light
“Blood Biomarkers: A Light at the end of the tunnel”
Dr. Marvin Medow“Slow Flow” - vascular problems
Dr. Dikoma Shungu - “Researcher Dikoma Shungu Continues Brain Studies with Association Grant”
“Study finds link between CFS and high lactate levels in the brain”
You realize that with that statement "they're not on our side" you're basically saying this organization is bogus. Honestly, its amazing to me to see all that other work thrown away so quickly. One of the few organizations that's actually doing cutting edge research....is not on our side - which means. of course, they're on 'their side' - the bad guys side, the ones that don't believe this illness is real, that believe it doesn't deserve any more research.
Sure you may not agree with things that they do but I think that statement goes too far.
Jspotila, thanks for representing the CAA here. I know you've taken heat for it but realize our comments are not directed at you but at the overall organization.
I had heard about Alex Howard in my own search for treatment but after reading about him, I decided that he was more psychobabble than reality. Alex Howard is a young man who says he is recovered from CFS after being sick from age 15-22. Studies out there, most notably David Bell's from the 1990s, state the recovery/ improvement rate is 80% for adolescents. My feeling is Mr. Howard likely recovered because he was young and not largely because of any particular technique. This was Dr. Bell's conclusion also from following his own patients. Unfortunately, as he alluded to in December, Dr. Bell is seeing relapse in his young patients.
I wish Mr. Howard well but he should not conclude with the arrogance of youth than everyone else will improve like him. This also contradicts the data out there. A 2005 review of prognosis research in CFS by the Dutch no less concluded the rate of recovery was more like 5-10%.
Mr. Howard cannot be compared to Dr. Jason or Dr. Campbell, both PSYCHOLOGISTS and men who came down with CFS in their middle years. Both advocate pacing as a way to get a better quality of life and reduce symptoms but niether have ever touted pacing as a true treatment for CFS or promised that people would have an ever-rising functional status if they followed their programs. Who are you going to trust - two professionals or an young amateur?
I hate to be cynical but someone I talked to recently said perhaps the CAA downplays disability because it's not the disabled folks who have the money to support the org. Although being the disabled sucker that I am, I continue to give to the CAA.
RE: the sickest folks. In my past life, I've worked with homebound people who couldn't get to the doctor's office because of their disabilities. These were by far sickest folks. If the CAA wants to advocate for the sickest, start visiting people who are home or bedbound. I know Nancy Klimas' group is doing this right now.
Thanks Julius, you're right!
I sense this idea that the CAA does not advocate for seriously ill patients is,for some reason, settling into the bedrock. Its becoming accepted wisdom and I'm not clear that that is so. Perhaps they should do more I don't know.
Cort, just check out this one paragraph. I don't usually get involved in all the CAA ruminating, but if you read the article the guy really does go on for some time stating that all you have to do to recover is pacing. And that's all well and good. That's logical, we all know that. But then in almost the same breathe he goes on to say that the reason people are not recovering is that they have, basically, "illness beliefs" that are stopping them from getting well and being active. So he is saying you need to slow down and pace youself or you'll never get well, get up and get back to work -stop avoiding your painful or scary life experiences and figure out what you want to do with your life.
At the very least it's contradictory, it makes no sense, it's not a great message for an advocacy group for patients to send out to doctors, therapists etc. that their patients could be held back entirely by these kinds of beliefs.
I think CAA has a duty to represent all patients. But I still can't shake the feeling that most of their educational material and advocacy work ( I am not talking about their research program here) is geared towards mid to high level functioning patients while completely ignoring the needs of people who are the most vulnerable. These are the people least able to advocate for themselves when it comes to doctors, caretakers or family and it seems like too often, if they are mentioned at all by the CAA it is like and asterisk at the bottom of a page.
I am happy that you have found a way to tone down whatever part of your brain is overacting to your surroundings, and I have followed your descriptions of the things you do with interest, but I don't think that the things this guy is aiming for, or the message that comes across through this article, is anything like what you are doing. To be honest I wish they'd sent out one of your articles, or as someone else mentioned Leonard Jason has had some very good pacing articles. But this is different.
This is an honest question and not intended to be snarky in any way: would you prefer that I not make sure that your input is considered? Believe me, it would certainly make my life easier! Staff reads these forums. They don't need me to pass anything on, but when there are questions such as raised in this thread I do take the time to pass input on. I try to find answers to questions, and find resources on the website as well. I've responded to thread discussion as well as direct messages. It is my belief that we need more dialogue in the CFS community, not less, We need more discussion, less shouting and pointing fingers. This is a general belief/observation of mine, not directed at any particular person or thread.
I appreciate your honesty, Hope123, and I do not take things said about the CAA as if they are personal to me. But I have to address this statement. I am severely disabled. I cannot drive, cannot walk more than a few minutes, cannot live independently - and I am not the only Board member in this situation. We are intimately and personally acquainted with what it means to be housebound, bed bound - severely ill because of CFS. At this very moment, Ms. McCleary, Dr. Vernon, two Board members and my own mother are meeting with people on Capitol Hill on my behalf, on your behalf, on behalf of ALL people with CFS, from bed bound to working.
Everyone is free to draw their own conclusions about the Association and the work it does. Any movement for change needs many voices and many approaches to achieve the ultimate goal. But as far as I can see, we all share the same goal which is a complete return to health for every single person afflicted with this disease.
It very well may be that the CAA could be bringing seriously ill patients more into the picture - you would probably know more than me; but it turn it into a statement - which I'm NOT accusing you doing -that the CAA does not advocate for seriously ill patients takes that issue several steps further than I'm comfortable with.
I see things that please me and displease me in that article. I admit there's some psychobabble in there and I do not like that portion of the article at all. I think its simplistic. For instance I can see my body rearing up and going nuts over the idea of doing something and I can calm it down and then do that thing sometimes. But its way deeper than a belief system. Its like an inherent fear - which is why the idea of the amygdala being involved speaks to me quite strongly. The rest of that is just crap to me. You don't know what you want to do with your life. I can see how that could tweak some people ... pretty bad stuff.
Other parts aren't so bad; they clearly state that very ill (and not so ill people) people are physiologically impaired from engaging in activity and doing it will wipe them out - very different from Wessely and his ilk. They mention oxidative stress, immune problems, HPA axis problems and methylation.
Its a strange blend for sure. :Retro redface:
Jenny I just want to say thank you for listening to what we have to say. Thank you for putting up with us. And thank you for passing some of it on. I know it can't be easy, and I'm glad you're with us. You're very patient.
Yeah, I didn't really mean to start an insurection or anything! It's just something that's been in the back of my mind for quite a while reading their articles and newsletters and stuff. It's their articles and info that seem geared to higher functioning patients and their needs. And it seems like a lot of the bones I have seen people pick with the CAA could have been avoided by a simple paragraph stating at the outset that things like this don't apply to all patients
Personally it makes me angry when I read stuff about pacing, relaxing, meditating, CBT and GET because it has the presumption that I created this disease and it was up to me to get out of it. I didn't create this disease, it is not in my head, I am sick, and honestly it is the last thing (the CAA article) I want for my doctor to read. The best advice I got so far has been from my fellow CFSers which has been rest, don't over do, avoid push -crash.
It occurs to me that CAA very rarely mentions viral causes to CFS, and that if the retroviral theory proves to be linked to CFS, and a cure is found, maybe it will take care of mitochondrial dysfunction, improve cognitive function etc... I understand that CAA is not putting their eggs in the same basket, however, one egg might be golden. And one of 2 eggs might go bad.
Awful. Dissapointing. Frustrating. I had very few words available today...after reading this...I have even less.
A THANK YOU!, to Dr. Yes (post#21 your bold blue)
(Wait! I think I found some more "words"! IMO - this is all ABOUT the impression the "outside world" has! - until this is changed we can't hope to get the treatment/respect we are in dire need of!
I'M running out of time!....and every piece of literature out there MUST COUNT towards promoting an ACCURATE understanding.....more so, for the sickest of the sick!.
It's no longer good enough to say "well...ALTHOUGH the language wasn't QUITE right, some of the assertions weren't TOTALLY correct or a few of the suggestions MIGHT be damaging to SOME patients, in one way or the other...there's STILL some good information to be gleaned". Not good enough.
It's the overall IMPRESSION being put forth - THAT'S what the "outside world" is going to take with them (and part of that world consists of Health Care professionals wondering what to do with us, Disability Officials - not to mention our very families and friends!) - And THAT's the problem!)
Just saw your last paragraph Hope123...Thank you, as well!
So if I'm not recovering then I'm not doing enough? Recovery is a forgone assumption. Failure to recover is my fault? I'm not committed and I'm non-compliant. And while we're at it, lets make out the use of supplements to be an act of avoiding the real underlying emotional reasons for my failure to recover.
As I have said before, I appreciate the research that the CAA is sponsoring and I am a huge proponent of doing everything within your means (including counseling) to lower the metabolic demands on a vulnerable body (and I would never argue that our emotional world is not connected to metabolic demand) but I cannot read this without coming to the conclusion that portions of this, such as I have outlined above, are simply self-serving rationalization written more to pacify feelings of impotency on the part of the practitioner when patients don't improve.
The real danger here is that there is good advice on pacing mixed in with dangerous preconceptions.
Standards for psychological theories passed off as 'knowledge' are pretty low and this article, with the CAA's stamp of approval, does not come anywhere close to their standards for physiological research.
The CAA actually does mention viral causes and they are (or just were) currently funding research into a viral cause of CFS - those endogenous retroviruses. Dr. Vernon actually told me that when she first came to the CAA that she thought the research program would be ALL viral; thats' what she wanted to do. As it turned out one study looks at the micro-organisms in the gut -a pathogen study and then there is (or was) the HERV study and the rest are looking at other physiological factors.
Over the years the CAA has funded alot of research into pathogens - more than anyone else.
I agree that they don't push the viral angle much. It was really out of favor for quite a while in the research world. Over the past 3 or 4 years with Dr. Chia's, Dr. Montoya's (which didn't really work out yet), Dr. Lerner's and the WPI's work has pushed it more into the forefront.
What the CAA does not really do, I don't think, is talk much about antiviral treatments. I could be wrong but my sense is they're very conservative in that area. These are some of the few treatments that have the possibility, I think, of returning very ill patients to health. They tend to be quite expensive and, of course, there are the possibility of side effects. Nevertheless they are an important part of the treatment picture. I don't that the CAA has gotten on top of those.
They do seem to prefer more innocuous subjects like 'pacing' There is a conversatism, I think, in the treatment area, that gets tiring. I just did a blog on a patients significant recovery using Vistide; its a tough, tough drug - its off-label. its not approved for CFS, it can wipe out your kidneys in ONE treatment, its VERY expensive...but it did work with this person. Would the CAA do that article? I don't know if they would
Their research program is very bold, very innovative...in other areas I think patients would love to see them branch out more.
It's not saying you caused this disease. It's not saying psychological issues caused the disease.
Look, if I take a couple aspirin, I often feel a bit better. It offers me some relief. There is also a suggestion by DR.Mikovits that it might help my body deal with XMRV.
But does that mean I got sick because I didn't take enough aspirin?? No, it doesn't. I definitely didn't have an aspirin deficiency which led to me getting sick. But aspirin helps me feel a bit better.
Now, replace 'aspirin' in the preceding with any number of remedies that help people get through this disease. Do any of them have to do with what caused the disease? NO.
Another point. When someone has a spinal injury that leads to quadriplegia, many of them need psychological counselling to help deal with the effects of their new condition. So, is quadriplegia a psychological condition? Is it caused by psychological problems? I think according to members here it must be.
Different things offer relief for different patients. I don't see why that is so hard to accept.
Thank you CBS for your post. I appreciate the care you take in articulating your thoughts and the clarity you express them with.
I understand what you're saying Kati, and definitely agree with Cort that the article has good points and some very bad ones.
I also totally understand that CBT and GET are two acronyms that instantly and instinctively our buttons.
Having said that...bear with me here ...isn't "pacing" the same as "not overdoing it", or avoiding the push-crash cycle?
Isn't meditating a type of 'rest' or 'relaxing' (if one isn't in pain that is)?
That's the way I try to look at it when I see CBT or GET, but as noted above, I can at the same time understand why mention of these three letter words gets everyone so riled up.
just my two cents.
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