Discussion in 'General ME/CFS News' started by starryeyes, Dec 24, 2009.
lol. Sad but true.
These are very good points. I do as much of the business of living as I can to keep myself as fit as possible. If I can get myself a glass of water I do it or I will tidy up a magazine. Doing these sort of things I managed to get more movement back and I think it is more useful and rewarding than specific exercise.
In the UK, the clinics are obsessed with walking for a certain amount every day. From the forums you keep hearing about people who can do nothing else except their specified walk. It would be fine if the walk was curative but as it is they are missing out on things that could add colour and enjoyment to their lives.
I do not think deconditioning is very important in ME. For the first few decades of my illness I was much fitter than the average desk worker. I walked everywhere as I found it much easier than standing waiting for a bus - I never new about orthostatic hypotension but that is obviously what it was.
I took the kids to nursery, to school and went shopping. However I was still very disabled with ME, mainly with neurological symptoms like paralysis, vision problems, severe pain and confusion. When they started talking about needing exercise I was astounded as I already did much more walking than the average person.
I went back through Association materials, and the document that was referenced at the beginning of the thread is actually an excerpt from the Association's special issue of The Chronicle entitled "The Science and Research of CFS" from 2006. The Table of Contents, and many of the articles, can be found here:
The information is on your page for health professionals under Clinical Care for Chronic Fatigue Syndrome. The most harmful aspect of your information are: 1. The article by White, and 2. the lack of adequate warnings and guidelines about preventing post exertion malaise.
Mithriel that is a very good point you made about a walking plan taking up the only energy some of us are given. We need to do the best we can but many of us have to abide by the Spoon Theory. If that wasn't so and if we didn't experience a worsening of symptoms after exertion I would be for an exercise program for all of us.
I also object to the term PEM (Post Exertional Malaise). It's not malaise for many of us. For many of us it's a worsening of illness and pain symptoms that can completely cripple us. I end up in a wheelchair for days if I try to walk a bit daily for example and that's just to go to the bathroom and get food. I'm completely knackered and in terrible pain and very, very ill for days after too.
Good point. In my case, it is all symptoms getting worse. Maybe it should be Post Exertion Decline .
Yes. Or "Post Exertional Exacerbation". (Which, BTW, doesn't seem to me to be the baffling symptom it's made out to be - surely it's the same thing that happens if you go for a run when you have swine flu - but that's not something any doctors are recommending.)
So, I haven't gotten the impression that the CAA has any plans to take this document down, or change it. Anyone else?
haha that reminded me of this:
Totally off-topic, but that cartoon made me laugh. I have been telling my husband for years that you shouldn't explain things to the dogs, that they have no clue what he is saying if he doesn't use key commands. I showed him that cartoon. It got the point across!!!
Sorry if what I am about to say is a repeat of a previous post. Teej, my buddy, will certainly forgive me I am sure. There are just so many pages. I read the first five and the last two. I didn't read the brochure. I think I know enough about what y'all have said to make the following comments.
1) I don't know enough about Peter White to say if the quote is appropriate or not. What I know is that CFS patients don't like him. From a PR standpoint, it might have been best to leave him out. But the information wasn't intended for patients. I don't know what kind of reputation he has in the medical world. It may be they felt doctors would pay attention if White is quoted, the overall brochure would have more credibility, in the eyes of doctors (even though it would have less credibility to patients.) So maybe they found the least dangerous quote they could find. I don't know enough to say just how bad quoting him is. I do know I am thankful I don't have this illness and live in the UK. And I am very sorry for my CFS victims in the UK that are on the front lines and therefore receive more injury in the fight to have CFS (ME if you wish) recognized as organic.
2) When I was accurately diagnosed by my gyno, I went to the book store. I got a book on CFS. It was written by a dentist in Australia. I am so thankful that it was that book I got. He advises that you spend first three months, basically in the bed and gradually increase activity, get up and fix a meal and sit on the back porch an hour. Do that for a month, then add another activity. This is so totally different than what my life was as a healthy person, a life I was still trying to live, that I would never have taken such drastic limitations without his book. I began to see rest as part of the treatment, and not just something I had to do because I couldn't do something else. This was validated by a local nurse I talked to who used to run a CFS support group in the local area. I asked her, when I feel fatigue, should I push. She said no, I am doing more damage. I contacted CAA. They sent me their magazine. The information in there was in line with the others. It said that if you are working, try to find some time during the breaks to lay down or rest. And later articles similarly advised against the push and crash cycle, but instead pace. I found so much helpful information there that I would not have known without the CAA. All of this to say that patients likely need to learn pacing more than they need encouragement to be active. Most end up being too active and cause a crash. And I think doctors would likely not understand that aspect, unless someone educated them on this unique aspect of this disease. So having much more detail on the dangers of PEM would seem better than the mention of GET. Although, I do think the small increments and rest in between is likely good. I just hate the word "exercise" is used because it brings to mind weight lifting and aerobics. Stretching, light walk, putting dishes up, all these little things are good in small doses and would prevent deconditioning. But even those things may not be advisable on a bad day. It all depends. I wish they would use the term "body activity" instead of "exercise". But I think Klimas' advice to do small increments of activity is good. Before I got the good advice I was trying to live a normal life. But almost every day I was crashing at 4 p.m. to the point it was dangerous for me to even drive home. I don't think the problem is the mention of body activity in small doses is wrong, it's a matter of what is emphasized, the small dose of body activity or the PEM? In my view, given the tendency patients have and unusual nature of the illness, emphasis in educational material should be on the PEM. Some patients, though, learn by trial and error, sometimes over years, without outside advice, that pacing makes for better results.
3) Sending to psychologists of psychiatrists. I have no problem with this, as long as the professional knows it is a real, organic illness. In fact, I know two people who were misdiagnosed with depression. Guess who figured out they were misdiagnosed? The psychiatrist the family practitioner sent them to. One woman I know was having fatigue. Her doctor tried figuring out what it was, and gave up then saying she has depression and sent her to psychiatrist. That doctor did some neurological type questions to test the function of her brain. After thirty minutes, he told her she doesn't have depression. She has a sleep problem, likely Apnea. And so it was. Another friend had doctors in the local area say she has CFS. She moved to another state. The two doctors there that she tried told her she has depression. So she started going to a depression research center for free medical care. Months into the drug test program, they called her in and told her she doesn't have depression. They couldn't tell her what she does have because that is not their specialty. But they said she does not have depression. I think a psychiatrist may be better at recognizing true depression and falsely diagnosed depression because that is their specialty, in contrast to the doctor on main street who thinks anything that isn't shown in the labwork is likely depression. Also, psychologists who recognize it is an organic illness can likely be very helpful in us dealing with guilt over what we expect of ourselves, what others expect and what our limitations are. Also, the loss of the life that we had in our dreams, especially if we are young. They can help us learn to live with a chronic illness.
4) I am torn in my view of CAA. I am so appreciative of their brochure with so much info on latest research. I am thankful for their lobbying. I think they are very valuable in educating new patients. They also have info on how to apply for SS disability. I know they have not been as aggressive and confrontational as some patients want. But I have seen Kim's testimony at the CFSAC. And it seemed to me she was not holding back in her criticism. At the same time, most lobbyist will tell you that lobbying is about trying to win friends of those in power. I have seen this in local politics as well. When everyone is mad and pushing and not talking, they don't realize that they actually are very close in their views, but they become polarized as they struggle for power. If only they were talking. Politics is about compromise. How to walk the fine line between bringing change by working with government agencies and protecting the interest of the patients can be difficult. It is gray area. From what I have seen, in recent years, they have done that well. Didn't they abandon the CDC cooperation recently? They criticize the five-year plan. But honestly, I read that plan and didn't see any big alarms. So they aren't being wimps, but trying to be strategic. And maybe we need both. Maybe we need an organization that pounds on the door demanding change. And then we also need an organization that reaches out their hand and says, "Let's talk about this." I really think that even Wesseley is not set out with the malicious intent to hurt CFs patients. This is not a psychopath. It is people with bias. And bias can be changed with information. It's about winning people over not bulldozing them down, especially when they have the money and the power. Now it won't always work. some biases are so ingrained that the amount of evidence needed to change them must be a mountain. I am reminded of the fact that many call the psychoneurotic pushers as "flat earthers". If you think about it, how many now believe the earth is flat. But when the scientists first saw evidence of a round earth, the other scientists were in the majority denying the new evidence. But the evidence finally amounted to so much that they had to change their view and set aside their bias. It wasn't malicious, it was pride. You can't reason with people and present evidence if things are so contentious that you aren't talking or they always feel you are attacking. That just makes you defend your position. By having an open, we want to cooperative, attitude, how many scientists have been won over by CAA showing them the studies? It is evolution over time, to change a culture, it isn't revolution.
P.S. My thought is we need the Hillary Johnson's, we need the research group, IACFS/FM, and we need the CAA. Kind of like a good cop, bad cop. Let some do the confrontational, demanding, in your face stuff. And then we have the good cop come in and say, "Hey, now I am your friend. I understand you want the best. Let me show you this."
I'm afraid I couldn't read all of your post because of the big blocks of text. Maybe you will break it up
Anyway, I just wanted to say that everyone with ME/CFS owes it to themselves to find out all they can about Prof. White and the other players.
We live in a global village; insurance companies are international.
Chronic illness is expensive and, to many, distasteful which is why they would rather see us as having a moral failing than a physical one. "If I have to keep plodding through my exhausting, difficult life, why shouldn't you?!" This is human nature which is independent of geopolitical borders.
We are expensive and we are expendable; not a good combination.
I'm all for Post Exertion Decline or Post Exertion Exacerbation. They are both way better than "malaise". Malaise makes us sound lazy... yet again.
I couldn't convince the doctors or the psychiatrist that my Disability Insurance company sent me to that my CFS wasn't depression. My Disability was put under "Depression" for over a year. During that time my Dis. Co. forced me to see a psychiatrist and it took me almost a year to convince her that I was physically ill and in intractable pain from CFS and FMS and not depressed.
I'm glad you had a good experience with you psych Tina but that's not the norm for what patients experience. I live in an area that has some of the most informed doctors and I contacted my local support groups and tried many doctors and specialists they suggested and I was treated worse than scum by a lot of them.
Happy New Year, good people!...
I have promised certain people (and myself) to rest more, but I think I've been pretty good so far.., so:
Andrew, in response to Jenny Spotila:
Yeah, I was going to point that out too, Andrew... thanks for refocusing the issue. And no, F.e., I haven't seen anything yet about that. Just downplaying its prominence (which they're wrong about, as Andrew pointed out). I guess we'll have to contact Jenny directly or else...what? A petition? It would be nice if we could address more than just the Peter White inclusion, i.e also ask the question as to who was responsible for that even getting in there, or who knowingly approved of it -- important questions, in my mind. And, even more importantly, pursue the issue of removing/ improving any dubious information the CAA puts out there.
Teej, that's a great point about the term PEM. "Malaise" is yet another vague French-ish word that we've been saddled with (like "fatigue"!). I've always tried to explain to people who think you just have to "tough it out" that over-exertion can wipe out months or more of slow, painstaking progress, or cause a setback for another stretch of months or longer (and worse, start a downward spiral that can last for years). I think the term "Post-Exertional Decline" is a good one, Andrew. I'm trying to think of a more severe-sounding term, but so far no good.
F.e., the only problem I have with "Post- Exertional Exacerbation" is that the acronym will be "PEE".
It's really bad, Tina. Peter White is a psychiatrist (NOT a physiologist, cardiologist, exercise specialist, immunologist, virologist, neurologist...) who relentlessly changes government policy to view CFS as a psychosomatic disorder. That right there ought to be enought to keep the CAA from introducing him to our prospective doctors. He is not well known in the American medical community (nor should he be, as he's a very poor excuse for a scientist). Please read the threads on Peter White and on the Psychiatric Lobby (forget the title.."What's It Saying", or something).
To give you an idea of the significance of this and its relation to doctor education, check out the YouTube video: http://www.youtube.com/watch?v=bvArXvqAMiA (Part 1 of 4)
(Yes I've posted this before, in this same thread, I think.. but I really think it needs to be seen by every ME/CFS patient!)
It's a four-part video (part 4 is the best) that is a training video for UK doctors put out by some of White's colleagues, teaching them that CFS is due to "wrong illness behaviors", is psychosomatic, but instructing them to lie to their patients that they "believe it is physical" in order to get them to accept CBT/ GET... Here's Part 4 (thick with editorial text commentary, but the points are valid).
Note how familiar the opening sounds, and how "normal"...but then note the underpinnings behind it. You have to see the other parts, or just read their own comments, to see where they're really coming from. They're saying to "go slow" with activity because our false belief that we are sick have to be "gradually" re-conditioned, not because we physically need it. Plus, when they say "gradual" in the UK, it ain't what you might think.
That's just a taste of the Peter White plan for CFS in the UK... so why introduce him to doctors here??
Re: the helpfulness of CAA brochures -- I'm glad they helped you. But they are far from acceptable for patients with severe, or potentially severe, ME/CFS. Please read my posts on the subject of the other CAA literature on exercise (if you can find them), or those of any number by others here (incl. Teejkay's).
Re: Psychiatrists... Again, you have had the polar opposite experience from mine and that of many others (esp. in the UK)! As Koan rightly pointed out, there has long been a powerful political mobilization by various vested interests pushing the "psychosocial" model of "CFS" and suppressing valid research into the physical causes of the disease. We owe our continued poor health in large part to the efforts of these vested interests (incl. insurance and pharmaceutical industries). There's information on this topic, esp. on Simon Wessely's vested interests and role as a political agent, in the following document:
"The Mental Health Movement: Persecution of Patients?"
It was presented by Prof. Malcolm Hooper to the House of Commons Select Health Committee. It's a must-read for the info it presents.
Your point about compromise... I don't think any of us can afford any more "compromise". We're compromised enough by being ill; what else can we give up? The right to a correct medical diagnosis? Well-funded research into our disease? Insurance coverage for treatments that can help? We've lost those already.
As for the good cop/ bad cop idea, I agree that's an effective approach... but the "good cop" still has to be a real cop!!
ETA - Didn't know the video frame would be so huge! Is it supposed to be that big? Oh well...scroll right...
p.s. just as I was finishing this post someone brought me my mail - the CAA Chronicle! Haven't gotten one since the mid 90's. Bizarre.
That is bizarre Dr. Yes. Did you order it?
People can click twice on YouTube videos here and it will take you to the same video on the YouTube site and you can watch them full screen there. I don't like that it embeds them so large here myself because while it fills the main window it doesn't fill the whole screen and I find it actually harder to watch.
Lol! In that case PED would be better.
HAHA! I have PEE!
"Performing normal daily tasks, such as cooking, often results in PEE. Studies show that preparing liquid beverages, particularly coffee and tea, leads to rapid PEE."
Oh someone stop me -- this is a hoot!
Actually I prefer exacerbation -- more descriptive, in my opinion. But hey -- I don't think the powers that be give a rat's ass about my opinion
You're on a roll, M.L. Got me laughing too - Oh, you're so funny
Do you know that in almost every other illness - something that exacerbates it is known as 'worsening of symptoms'. It's standard terminology in medical literature.
That would make it PEWOS - doesn't exactly role off the tongue,
Better than PEE
Well, yes, but what about turning it around to "Worsening of Symptoms Post Exertion?" That acronym -- WOSPE -- slides right out of the mouth and then stops abruptly. Because it sounds a lot like "Whoa--Splat, " it's a twofer: standard medical terminology and an accurate, evocative sound effect.
WHOPSE! I cleaned the fridge
WHOPSE I love it
WOSPE - Yes, that's much better. To me it sounds like "whoopsie-daisy"
Or it could be pronounced 'waspy' /ˈwɒspi [wos-pee]
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