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

[Gerwyn]

From the CME



I do agree that this is overly optimistic! That patients will be able to handle getting up, personal hygiene at some point but everything is still constrained by the fundamental point that if activity increases your symptoms - don't do it!

I also agree the CME does not address the really, really severely ill patients like Mike Dessin was. That's a hole in it, for sure. I'm not saying that its a perfect document. I would address the overactivity element more. I would put viral and hormonal therapies in there. Its not perfect - but its the best that is out there for general consumption and its far, far, better than the SPARKS document.

its not overly optimistic it is wrong and dangerous.if the activity increases the symptoms it could be 4 years before they can give it another try>By the time a person with severe ME patients realises that their symptoms are worsening it is often already too late

 

[jackie]

I wonder if perhaps a part of the difficulty we're having in getting some of these points across (that DOCTORS must be carefully RE-educated...and that it would be BETTER that exercise/activity is strongly NOT recommended - and "contraindicated" would be best, imo)....is that a great many people never make it into a doctors office regularily....to experience FIRST-HAND the ignorance! Lack of insurance, lack of qualified specialists, lack of access close by...much too ill, or just dis-trust and fear.

As someone who does go pretty frequently to doctors/specialists as well as referrals to labs/testing facilities etc....i can tell you that most non-pwcs and professionals are NOT listening or even attempting to understand the dangers.

When I was sent to a cardiology lab and ordered to do a treadmill-stress test/ct heart scan, I painstakingly photocopied every study I could find warning of the risks of this. I carefuly explained the studies/info...and three technitions smiled, pointedly threw my papers in the trash in front of me...and told me to just try harder to do the test - that I'd be fine, I was just de-conditioned. (fortunately for me my HR skyrocketed to 180, within 2 minutes...and they stopped the test - but two minutes was all it took!)

When my I.D. doc found out he had a FIT, saying this was one of the WORST things that could have been done to me....and was justifiably worried about the long-term effects. Needless to say, I relapsed badly (many months).

And as I've said many times before, even my primary care doc and ESPECIALLY my Neurologist STILL automatically suggest excercise when I show up to my appointments. My neurologist wanted to make sure I had an adequate cane to use when I went for "long walks"! He said he had NO IDEA what the term "Post Exertional Malaise" meant.

Look anywhere on the internet and google exercise recommendations...yesterday I went to a site (i forget how to link...sorry teej!) that said "regular exercise has a positive effect on the general health of people with diseases and chronic conditions". Another said "Patients with Parkinsons, MS and Alzheimers should be encouraged to regularily exercise".

And, of course, they are fine for the "regular" population. NOT us! Obviously, those well enough to move without PEM occurring ..will MOVE on their own - without a recommendation to do so.

Doctors KNOW these recommendations...without WARNINGS TO THE CONTRARY for those with me/cfs from our advocacy groups...why in the world would WE be any different than a disabled MS patient...in their un-enlightened eyes???

I have tried to get my point across (both to my various doctors and here) - I've said all i can, given examples - along with so many others...now i will give up. j

 

[Cloud]

IMHO,

PACING: Great! We need that to prevent crashes and disease progression, and to allow our bodies the best shot possible for recovery. We need to educate new people with this information to spare them the hell of disease progression. Pacing should be a top priority in any treatment plan for ME/CFS.

GET: Dangerous in any form for most of us. Therefore, tt should not be part of any educational or recommended information for the treatment of ME/CFS. In fact, it should only be mentioned as a bold lettered WARNING against it in any form. There should be no arguments about what forms, levels, periods of exertion etc, may or may not be acceptable.....None of it is acceptable! The patient should be educated and supported to learn to function within their energy envelope (pacing), and trusted they will expand that at their own pace as their health allows, and not the other way around because for most of us, the other way around is deadly.

It's not at all my personal experience, or that of countless others......but even if there are milder level PWC's who may benefit from GET, I would still say that GET should not be part of any general recommendations until more is known about how those people can be accurately identified. It's not good enough that a few doctors currently have some understanding of those differences and respect it.....we need the science behind it. Trial and error is not an option with something so dangerous. Until there is a definitive test that determines who will and who will not benefit from GET, it should not be considered, supported, or suggested in any manner as being helpful for ME/CFS.

 

[Cort]

I know where you're coming from, Jackie. I think any doctor who took that course would recognize, however, that the inability to engage in aerobic exercise is a key facet of CFS.

Here's a section from 'Managing Activity' where they clearly state how limited the activity levels of many patients are. I think this would be a real eye opener for your doctors.

Nancy may also have to learn how to delegate work, defer unnecessary activities, or delay activities until a "better day." Sometimes shifting activity from light or moderate tasks (vacuuming) to sedentary or light tasks (peeling vegetables) may help. Most patients will report a small daily "window" of time when they feel best, which should be reserved for more essential, difficult, or cognitive tasks.

Note that they address the problem of 'school phobia' as well

CFS occurs in children and adolescents, though less frequently in children younger than 11 years.[8,20] Pediatric CFS often leads to frequent school absences, a decline in academic performance, and a severe decrease in extracurricular activities. It is not uncommon for pediatric CFS to be misdiagnosed as school phobia, anxiety disorder or depression, or as a manifestation of severe family dysfunction, leading to underdiagnosis of the illness and inappropriate treatment.

Where else have you seen that spelled out to doctors before?

Justin wants to boycott the CAA but I think he would appreciate the fact that the course clearly states that the postexertional malaise in this illness is not due to depression and that it, in fact, differentiates CFS patients from depressed patients

While certain symptoms of depression (fatigue, achiness, and sleep disturbance) overlap with those of CFS, the difference lies in the severity of symptoms. In this case, the fatigue is so severe that she is unable to maintain daily activities at home or at work, and if she pushes herself, she is markedly more fatigued for a day or two afterward. This postexertional malaise is typical of CFS, but it is infrequently seen in other disorders. Other clues to CFS are the rapid onset following a flu- or viral-like illness and the absence of depression prior to the illness. Additionally, depression will improve with counseling or antidepressants, but CFS is chronic; and while depression is usually responsive to traditional exercise therapy, CFS is usually worsened by that level of exertion. Lastly, patients with depression are hopeless and helpless, while CFS patients tend to be proactive and hopeful.

 

[Orla]

The problem is that this is an educational document for doctors. Your interpretation of exercise is not relevant, it is THEIR interpretation that matters and they are more likely to see exercise bikes and gym memberships.

The number of patients the average doctor will see who need to do more is vanishingly small but the number of doctors who cannot see that ME/CFS patients cannot exercise or do activity the way normal people can is horrifyingly large.

They must be educated about ME/CFS. That means their preconceptions must be overturned. They have been taught for years that deconditioning is harmful, exercise is good. They must be made to see it doesn't apply to us. It has to be hammered home. The outcome of very small amounts of exercise in a patient could be to become completely bedridden, in agony, tube fed and incontinent until a selfless family member injects them with a morphine overdose.

WHERE IS THAT IN THESE DOCUMENTS?

Mithriel

Excellently put Mithriel.

Orla

 

[justinreilly]

What is the CAA doing to support WPI?... This is a crucial time when these two organizations need to stand together...

Dr. Mikovits says where is the support from our patient groups? If CAA isn't supporting the WPI organization any way it can with the huge strides that WPI has made so far we don't have a support group....

They need to be a watchdog of the CDC...

Now Susan vernon is on a committee with the CDC and FDA as a patient representative. (The HHS Blood XMRV Scientific Research Working Group with DHHS Office of Public Health and Science, NIH, CDC, FDA and Suzanne Vernon http://www.cfids.org/advocacy/2009/gac_120409.asp ). We should know how she'll be representing us there. What will her goals be?

This is a time when they could be wasting a lot of money or making something happen. We need to make sure it will it translate into testing and treatment for ME/CFS patients in the near future.

Is the CAA pressuring anyone to provide funding to WPI to develop the tests for XMRv?

They have let us suffer too long. I think our representatives should be telling them we are really angry and want treatment now. We need an accelerated program. ... The federal agencies could be subsidizing testing for CFS patients or provide funding for developing the tests now.

Excellent analysis, kdp! I want the extreme injustice and demand for appropriate (ie astronomically increased) funding for ME constantly in the government's face. and where is the support for WPI?

 

[Cort]

They need to be a watchdog of the CDC...

Now Susan vernon is on a committee with the CDC and FDA as a patient representative. (The HHS Blood XMRV Scientific Research Working Group with DHHS Office of Public Health and Science, NIH, CDC, FDA and Suzanne Vernon http://www.cfids.org/advocacy/2009/gac_120409.asp ). We should know how she'll be representing us there. What will her goals be?

What do you think Suzanne's goals will be. I mean what are you thinking? Have you looked at her research program? Have you looked at what she's trying to do (Research Network, Patient BioBank, DataBank, 3 day Banbury Conferences with prominent CFS researchers.......). Her goal to further CFS research has been amply demonstrated.She's on the Committee with Dr. Mikovits. I'm sure Dr. Mikovits will tell us any concerns about Dr. Vernon - she's not shy about that.

"They need to be a watchdog of the CDC". Do I have to do this again? Do you read any of this stuff or do you just ignore it? Critique the CAA on their weak points but at least acknowledge where they're strong.

http://blog.aboutmecfs.org/?p=498

http://www.cfids.org/cfidslink/2010/010607.asp#2a

http://www.cfids.org/cfidslink/2009/050607.asp

I think our representatives should be telling them we are really angry and want treatment now. We need an accelerated program. ... The federal agencies could be subsidizing testing for CFS patients or provide funding for developing the tests now.-Justin

Why would you think they're not doing that? They just spent three days in Washington doing that. Do you think that just because the little CAA tells the government to do something they're going to do it? They pay the bucks to a Lobby firm to do that as well. They're working with well established successful Lobbyists - who are and have been, making a living at this for quite some time to do this.

Here's what they did on their trip. They focused on XMRV. They talked to members of important Senate Committees on health issues.

Our meetings emphasized the research and education opportunities presented by the surge in interest in CFS generated by the published report of a link between XMRV and CFS. This information was explained to staff representing members of the Senate and House Appropriations Subcommittee on Health and Human Services, Labor, Education and Related Agencies (L/HHS).

Here's what they asked for - you can read it directly

http://www.cfids.org/cfidslink/2010/040704a.pdf
http://www.cfids.org/cfidslink/2010/040704b.pdf

I assume that you'll want to boycott those nefarious activities as well...

They also tried to get new funding through the DOD

We also met with staff members of Congressmen/women who serve on the Appropriation Subcommittee for Defense, to build support for the inclusion of CFS as an eligible topic under the Congressional Directed Medical Research Program funded by the Department of Defense. We tied our request, which must demonstrate military relevance, to the recent announcement by the Veterans Administration to re-examine the services provided to up to 697,000 service men and women who served in Operations Desert Shield and Desert Storm (the Gulf War) and returned from service with multi-symptom illnesses. There is considerable research associating some of these illnesses with CFS.

They also spoke with these representatives

U.S. Senate
Sen. Richard Durbin (IL) (both committees)
Sen. Kay Bailey Hutchinson (TX) (both committees)
Sen. Herb Kohl (WI) (Dept. of Defense)
Sen. Frank Lautenberg (NJ) (past CFS supporter)
Sen. Patty Murray (WA) (both committees)
Sen. Jack Reed (RI) (Labor/HHS)
Sen. Arlen Specter (PA) (both committees)

U.S. House of Representatives
Rep. Rob Andrews (NJ) (past CFS supporter)
Rep. Danny Davis (IL) (past CFS supporter)
Rep. Rosa DeLauro (CT) (Labor/HHS)
Rep. Jim Gerlach (PA) (past CFS supporter)
Rep. Rush Holt (PA) (past CFS supporter)
Rep. Patrick Kennedy (RI) (Labor/HHS)
Rep. Nita Lowey (NY) (Labor/HHS)
Rep. James Moran (VA) (both committees)
Rep. Sue Myrick (NC) (past CFS supporter)
Rep. Dave Obey (WI) (both committees)
Rep. Ron Paul (TX) (past CFS supporter)
Rep. Ileana Ros-Lehtinen (FL) (past CFS supporter)
Rep. Chris VanHollen (MD) (House leadership)

If you think all of that's BS then please continue with your 'Boycott the CAA' movement. For me I want everyone we have working on this.

 

[CBS]

I don't believe people are recommending people do nothing. But if somebody is relatively well, they will most likely naturally be doing things.

As you said yourself:


People can keep track of activity with pedometers - they don't necessarily have to do extra exercise to do a reasonable amount. Simple things like going shopping can involve quite a lot of steps. Work may involve a certain amount of activity.

In such a circumstance, exercise is unlikely to benefit you anymore than the rest of the population. But done incorrectly has bigger risks. Exercise doesn't need to be a central part of an education program for doctors.

Hi Tom,

I'm not sure that I'm following your point. I don't recall suggesting that patients ever do anything that is not patient guided. I have also tried to be careful so that I don't refer to activity as exercise.

Were you just talking in general terms, using my earlier post randomly or was there something I said that didn't sit right?

Thanks,

Shane

 

[Dolphin]

I wonder if at the least research community is 'getting' CFS more; Bliejenberg wants to make PEM a central part of a CFS definition. It would be interesting to see what his version of CBT is. For sure, it includes watching out for negative thoughts that rile up the body but what activity and pacing? Based on what he said there's little room for pushing through a crash. If I remember correctly he laid out a scenario of cytokine caused (immune caused!) problems and oxidative stress......not what you'd think from this oft published psychologist.

Here's a little summary of the CBT Bleijenberg uses (there would be other ones out there but happened to come across this just now):

http://www.biomedcentral.com/1471-2377/7/6
Cognitive Behaviour Therapy

CBT will be based on the illness model of fear avoidance, used in the three positive trials of CBT [18,25,26]. There are three essential elements: (a) Assessment of illness beliefs and coping strategies, (b) structuring of daily rest, sleep and activity, to establish a stable baseline of general activities, with a graduated return to normal activity (TK: even though normal activity is actually rarely achieved, but this fact is usually hidden from readers), (c) collaborative challenging of unhelpful beliefs about symptoms and activity. Both therapists and participants will receive separate manuals.

18. Prins JB, Bleijenberg G, Bazelmans E, Elving LD, de Boo TD, Severens JL, et al.: Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial.

25. Sharpe M, Hawton K, Simkin S: Cognitive behaviour therapy for the chronic fatigue syndrome: a randomised controlled trial. BMJ 1996, 312:22-26.

26. Deale A, Chalder T, Marks I, Wessely S: Cognitive behavior therapy for chronic fatigue syndrome: a randomized controlled trial. Am J Psychiatry 1997, 154:408-414

I do remember Bleijenberg writing something of interest once in a paper (not the whole paper) in 2007-2008 - think it was about requiring post-exertional malaise. I pointed it out to Lenny Jason who said he'd seen it.

Apart from that, Bleijenberg just hypes CBT the whole time including saying it leads to recovery (using very dodgy definitions of recovery). He has suggested giving patients disability benefits is counterproductive. Dutch patients really don't like him. I have read lots of his papers and they spin their findings e.g. downplay the importance of the fact that CBT wasn't leading to increased steps and indeed didn't publish this fact when papers were published e.g. the Prins study in 2001.

 

[Dolphin]

There was a significant period in my life after having acute onset CFS when my symptoms were significantly less pronounced (doing better than Cort is right now). FOR MYSELF, I feel that at that time completely avoiding all stretching and any exercise would have been detrimental.

I don't believe people are recommending people do nothing. But if somebody is relatively well, they will most likely naturally be doing things.

As you said yourself:

As for counseling, I have never met a CFS patient that needed to be told to do more.

People can keep track of activity with pedometers - they don't necessarily have to do extra exercise to do a reasonable amount. Simple things like going shopping can involve quite a lot of steps. Work may involve a certain amount of activity.

In such a circumstance, exercise is unlikely to benefit you anymore than the rest of the population. But done incorrectly has bigger risks. Exercise doesn't need to be a central part of an education program for doctors.

Tom,

I'm not sure that I'm following your point. I don't recall suggesting that patients ever do anything that is not patient guided. I have also tried to be careful so that I don't refer to activity as exercise.

You mentioned exercise in the first part - that's what I was picking up on.

Also, in response to that sentence - none of us are suggesting that people who are relatively well should do nothing.

What I was trying to get at is that one doesn't necessarily need to tell doctors to tell patients to exercise just because of higher functioning people. Activity can cover it.

Additional point that popped into my head: I wonder is there an extra risk with possible former "exercise addicts" - supposedly people can get a little addicted to the high from exercise - it seems plausible to me as perhaps I might have been one so I am not simply talking about others. Such people may need to be extra careful if they have ME/CFS or they might have a relapse (or even simply devout too much of their energy trying to exercise themselves better to the detriment of the rest of their lives).
A recently published study, "Risk factors for severe ME/CFS" http://www.biolmedonline.com/Articles/vol1_4_50-74.pdf which compared those with severe and mild ME/CFS found that 53.7% of the severe people exercise 6 or more hours per week before becoming ill compared to 40.4% in the mild group and this was a statistically significant difference (Table 9).

 

[CBS]

Tom,

Thanks for the clarification. Given my state of relatively better health at that time, I did think of what I was doing was something more than just the activities of daily living (laundry, cooking, going to the store).

This whole topic is so sensitive, understandably so because if done incorrectly it can constitute abuse and be quite dangerous to our immediate and long term health. On top of that, skeptics and detractors have wrapped themselves in the CBT and GET cloak, implying malingering and psychological issues. It isn't hard for me to see how a well meaning doc who really does understand CFS might use a term in an imprecise manner that infuriates the CFS patient who has had to deal with the ignorant doc that takes the recommendation as license to ignore common decency and respect for the patient.

From my perspective, much of what the CAA is promoting is imprecise (and dangerous) language but I really don't see this as a mindset of indifference and malice towards the most ill (although I do agree that the longer the CAA takes to address the problematic and dangerous language, it can see that way).

What is most concerning to me (and I'm not referring to anything that Tom has said) is all of the angst and energy being spent in this thread when I really don't think we differ in what we want the CAA to do (pacing, patient centered, permission/encouragement to appreciate limits and to very often do less, advocate for assistance in developing coping mechanisms and NO CBT or NO GET).

The differences seem to be in the amount of time we are willing to allow the CAA to change (clean up the language and remove unsupported recommendations) and what we want to happen to the CAA if they don't make the changes fast enough.

I appreciate your response to my question. It helped to see where you were coming from. I tried to be very clear that I was only referring to myself. For what it's worth, recommending that I undertake that same amount of activity today would be completely and utterly the worst possible course of action.

Shane

 

[Orla]

Hi CBS

From my perspective, much of what the CAA is promoting is imprecise (and dangerous) language but I really don't see this as a mindset of indifference and malice towards the most ill (although I do agree that the longer the CAA takes to address the problematic and dangerous language, it can see that way).

Some of it is ignorance, but a patient advocacy group, especially a national one, ought to have a basic grasp of the history, and the importance of the issues of exercise intolerance, CBT, GET and so on. This stuff is not rocket science. It is easy to understand the psychiatric thinking on this issue (they have been banging on in much the same way the past 20 years and more). It is also easy to see how wrong they are if one either listens to patients and/or looks at the biomedical literature. Unfortunately the CAA have taken a far too uncritical look at some of their information sources.

As for indifference, I am not sure what you would call it, but it is like the more severely affected seem to be both misunderstood and just relegated to the sidelines. Even if one ignores the ethics of it, this is terrible tactically. Anyone can become severe at any time. And the severe in some ways may just be a more obvious expression of the problems people face. It would be good to make use of this for awareness purposes. It is hard for anyone to argue that someone wants to lie around in bed all day and not be able to live independently.

And as for the kinesophobia nonsense, how on earth they they let that get past them? How did that not jump out and immediately scream at them? I don't care who wrote it, they should have removed it.

On this whole issue I am reminded of a comment from elsewhere, totally different context, but still getting across what some might feel on this issue:

Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will. Lukewarm acceptance is more bewildering than outright rejection.
(Martin Luther King, Why We can't Wait, Letter from a Birmingham Jail)

CBS
What is most concerning to me (and I'm not referring to anything that Tom has said) is all of the angst and energy being spent in this thread when I really don't think we differ in what we want the CAA to do (pacing, patient centered, permission/encouragement to appreciate limits and to very often do less, advocate for assistance in developing coping mechanisms and NO CBT or NO GET).

I think there is a big difference so the angst is real and indicating a real divide. Some people want to just trust the experts (I am not sure what one is supposed to do when the experts disagree, which they do on the exercise issue). Some people are happy with the CME material on the whole, and don't understand why people are so upset. This is indicating a real division in the thinking on this issue. I think it is a bad idea to try to ignore this divide. One cannot go a few different directions at the same time.

The differences seem to be in the amount of time we are willing to allow the CAA to change (clean up the language and remove unsupported recommendations) and what we want to happen to the CAA if they don't make the changes fast enough.

That might be part of it, but I don't think it is the only one, and I gather than some people have been waiting some years already.

Orla

 

[CBS]

Orla,

Thanks for your reply. I have said this in earlier posts - maybe we need more than one advocacy group. Take all this energy, the real differences in opinion (and the very valid view that we don't have all day) and start a separate advocacy organization or maybe rather than starting from scratch, get an existing group to take concrete steps and lead the way.

HIV has its numerous groups. I guess what I'm heading towards is to "put pressure" on the CAA by leading, not just attacking. Maybe trying to take the lead is impractical, maybe not. Maybe showing the way is the only way to affect real change. Maybe the list of doctors that truly get CFS is too small to separate into numerous advocacy orgs. I seriously doubt that all CFS docs are entirely comfortable with the CAA recommendations.

I just don't think that the CAA is going to be swayed by what is likely to be perceived as an all out attack (or perhaps a hostile take over). Personally, I don't have the energy for the fight and I don't see it is as the best use of the limited energy I do have. I see all of the anger here as very valid and understandable but some seems a bit misdirected and none of would scream "approachable" if I were a CAA board member.

Maybe it is too late for cooperation. War is what happens when diplomacy fails. Which side (there are more than two sides here) gets to decide when diplomacy has been given a fair shake. Lots of casualties.

At the very least, I have very real concerns that ''Kill the CAA" will end up costing all of us quite a valuable asset on the research end of things (and unnecessarily so).

 

[a_solitary_soul]

Regarding the 'underactivity' issue. I don't understand how it would be possible for anyone with ME do underdo it even if they wanted to. Most of us struggle to get the support we need: it's incredibly difficult to get disability benefits, wheelchairs, help with care etc. I know plenty of people with mild/moderate ME who really shoudn't be working, but are forced to because there's no way they'd qualify for benefits, I am more severely affected and have to push myself to get to bathroom since I can't get an electric wheelchair on the NHS or afford to buy one myself.

I really find this passage very worrying, as it's exactly the kind of thing many doctors could use to deny severe sufferers help. Why give someone a wheelchair when all they need to do is gradually increase their excercise?

A subset of people with CFS are so severely ill that they are largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point that patients can handle essential activities of daily living -- getting up, personal hygiene, and dressing -- is the next step.

 

[Orla]

CBS you wrote earlier:

A very real concern that I see running through the recent activity on this thread is that those amongst us who are the worst off are concerned that all recommendations acknowledge and take into account and respect their experience and lessons hard learned (often through being pushed into overexertion or doing so of their own volition - my own story).

I would hope that along the way we can give those amongst us with different experiences and perhaps less severe symptoms the same respect.

I don't know where this came from, as I saw no one negating the experiences of the less severe. What came across to me was that the issues in some ways are very similar. Everyone from the severe to the mild do not need to be patronised and told to exercise, and for their doctors to be given misleading, opinion based advice, which will look to them like research and evidence based advice. The danger from over-doing it is much bigger than the danger from a small amount of under-doing it some of the time (a situation which is very rare anyway). But doctors are unaware of this.

Though severe people face particular issues, some of their experiences are very similar to the milder. All people with ME/CFS have limits to their activities, people cannot get themselves better through GET, and everyone wants proper research so we can get proper treatments.

But sometimes less severe people down play the concerns over exercise a bit, possibly just because they feel they can do a bit of exercise, or they think comments about exercise phobia and the like "obviously" don't apply to them, they can come across as dismissive of the concerns of the more severe. (I have come across this a lot elsewhere and find it disturbing)

But I am afraid that Cort (and sorry to name you Cort but it is going to be obvious to whom I am referring so I may as well come out and say it) is coming across as disregarding what long term and severe people are telling him, both about what the research is telling us, what their personal experience has thought them, as well as what some of us involved in groups for years have learnt from the experience of others.

This is in spite of his own admited lack of experience of this area, and his obvious lack of knowledge/understanding of the research into CBT/GET (I realise Cort that you may have focused on learning about other things, and that is fine, but don't then try to off-handly brush aside what knowledgable people like TomK are trying to say).

Gerwyn and Tom have pointed out multiple times (both here and elsewhere) that there is no evidence that GET works or that patients increase their activity on GET programmes. This has been admitted by its proponents. Mithriel has pointed a few times to the issue of context, which is critically important. (That is the context in which doctors are picking things up, and likely to read things etc.)

There is no evidence that severe patients can increase functionality through exercise.

I am afraid Cort that there is no point (or relevance) in deciding that you think that the sections on the severe are ok, if the severe people are saying it is not, and explaining why. No amount of comments along the lines of "it looks ok to me" (not an exact quote!) are going to make it any better.

I think part of the problem in general in this area might also be the lack of awareness of the actual lives people lead when they are severe. The more severe a person is the more vulnerable they are to the whims of others, the less power they have and the less choices they have.

There is no point in talking in an abstract way about patient choice, the patient right to refuse exercise and the like, when they are living in a situation where they cannot make free choices. We've probably all experienced a degree of coercion and being forced/pressurised into doing things harmful to us, but the more severe a person gets the more this seems to happen. This is one of the reasons why severe people are up in arms about the CME material. As the stuff on the severe is the worst, and even the tone of some of the rest of it is problematic (for everyone but especially the most severe)

Instead of writing out something myself on this issue explaining it I am going to repost something Dr Yes wrote on another thread on this issue to illustrate this point.

 

[CBS]

Should read:

A subset of people with CFS are so severely ill that they are largely housebound or bedbound. Making recommendations for care should only be done with great caution. Hand stretches, picking up and grasping objects may be all that can be managed, some patient may not be able to do this much. Getting up, personal hygiene, and dressing are often out of the question. Persons with CFS are much more inclined to attempt to much activity than too little, resulting in a dangerous and destructive "push/crash" cycle. A key tenant of activity for CFS patients is that it be patient directed.

 

[Orla]

The reality severe people face

Kim included this comment in her excellent thread on exercise

http://www.forums.aboutmecfs.org/showthread.php?4432-Excerpts-Exercise-quotes-from-the-Big-Talk

I have put some text in bold

Originally Posted by Dr. Yes
[snip]
Some background: I got put in this nursing home when I contracted three serious infections in three weeks (requiring two hospitalizations) at an "Adult Home" in Queens, the last being pneumonia. Naturally those caused a lasting crash in the ME/CFS overall. The nursing home is in a very woody area and my allergies have worsened - these (incl mold allergies) seem to worsen the whole ME thing, and allergic asthma/COPD that limits what I can do physically, too.

Plus I get way too little sleep, esp. lately, due to all the racket they make here esp. from the early morning onwards. I haven't been able to try even mild physical therapy since a big crash (allergy-related) in the spring. I have been pushing to have these situations improved since January. Nada.

ANYWAY...earlier today a whole bunch of people walk into my room while I'm trying to sleep (late, of course, due to a sleep cycle shift thanks to their constant noise..): it was my "care planning team" which includes the social worker who knows zip, the physical therapy genius who thinks I'm just afraid to leave my room and want to remain sick, the dietician who I've begged for months to arrange for better food (given my GI probs) and doesn't seem to mind that she does nothing, a Recreational Therapist who thinks I can do better if "I just will it", and a couple others who can't pronounce my last name (which they think is my first name).

I was bombarded by all of 'em about the fact that I am "just staying in bed" instead of going to the gym (which is right near my room, hence a lot of the noise) and exercising. (I should mention that I had been bedridden for the last several years and only last fall had any improvement, now mostly erased). I was extremely annoyed, seeing as I'd already had this conversation with each of them separately.

When I told them that I would love to exercise, and had pushed for it myself earlier but had it cancelled by my insurance, they said: "because you weren't meeting their goals."

When I told them those goals were for a person of otherwise regular health with an injury, not a disease, they said "well, that was then, but you haven't tried again since spring."

When I told them (again) that I've had a relapse/crash in CFS since spring, and its been downhill since then, they said: "So what you're saying is 'this is as good as it gets for me, and I'm just going to stay in bed the rest of my life'?"

When I said nooo, I would like nothing better than to get out of bed, but as long as I'm in a place where I can't sleep, can't eat well, have no treatment for CFS or other symptoms, and live in a high-allergy environment, I can't improve, they said "well that's going to happen to you at any nursing home..Why don't you just try? Build yourself up gradually. The more you push, the stronger you'll become."

I told them "Chronic fatigue syndrome places absolute limits on what you can do physically at any given time; pushing beyond your limit, as I've told you all before, causes "-- then I explained PEM and relapses yet again, and told them they don't know what it's like to have CFS. Then they chorused "Oh, yes we do.. nobody here is minimizing your illness.." I also told them about how many, many people with CFS are bedridden or at least unable to exercise, not through any choice of their own. The response: "But we don't want you to end up like them! That's why we want you to push yourself! You have to try!"

At this I started to really loose my cool - which I don't know how I've been able to maintain for the last year or so - and told them that frankly it really pisses me off when people who don't understand the disease or how hard people struggle with it just assume that they know better than patients who've had it for years or decades and that those patients must not be "trying hard enough".

As it got more heated, they said "well this is going nowhere" and I got some of those exasperated-with-you looks and they turned to leave, but asked if I had any questions for them. I was too burned out by this time to say anything intelligent, but I said yes what about an aide assisting with the wheelchair. I don't know about you guys, but I haven't been able to push a wheelchair myself without severe PEM since early in ME/CFS, when I was ten times stronger than I am now - not even after PT. (Wanted to start a thread on that, actually..).

The mindless, circular response was "well, if you go exercise, we could get you strong enough!" I told them I have a doctor's note (from an outside rheumy) explaining that I need wheelchair assistance and that PT would not be be enough to allow me to do it thanks to CFS. They conferred but then announced that it would be impossible for the staff to accomodate this need. (At a nursing home!?) I said but I'm trapped in this room, then.. that can't be healthy!! No response, and then they beat a retreat, advising me to still "consider the suggestion of physical therapy."

I was briefly furious, but I'm so used to this and so worn out that I just managed to swallow it. This kind of treatment is so familiar to a lot of you, I know. For me, it's become almost daily (though not always with several people scolding you and looking at you like a self-destructive headcase at the same time... still, I've gone through much worse.)

My point is this can, and I'm sure does, happen to any ME/CFS patient who is forced into a situation or system where s/he is dependent on others for housing and other basic needs. I don't have the right word for it.. not "humiliating", though that too... But it leaves an impact, and the anger inside just builds, and I hate being angry (and I've noticed that it really is toxic!).

I'm sure I'm not the only one who's been in a situation like this; there must be others out there who find themselves broke and with no one to take care of them, and I guess they wind up in the same boat. But that is where I think our information and at least some of our advocacy is best spent -- PROPERLY educating the MAJORITY of professionals about the real ME/CFS and how they must (and must not) deal with us if we wind up in their hands.

I was wondering what to put in a brochure, teej, but this reminded me of the physical disability part of ME/CFS, and the shocking ignorance and denial that we face daily about it by people who we depend on. Simply mentioning that "some patients are bedridden" while still advocating graded exercise is ridiculous; someone has to get it through to these folks specifically what our limitations are at different levels of illness and back it up with doctor testimony and research findings.

I think we'd have to emphasize the unquestionable physical reality of the disease, the injustice and stupidity of the "malingering" label, the specific physical limitations and requirements, and a demand (no more "please, sir") that those charged with care of those with ME/CFS research the disease before they claim to know what's best for us - as surely they would do for any other disease they were new to. (Would they allow a young member of their profession to come up with therapies for a person with MS, or lupus, or HIV if he had never read about those diseases?)

Well, that's my first rant, of sorts. Actually holding back a lot, but gotta go to sleep; appointment with a crappy cardiologist tomorrow. Who keeps recommending exercise for my NMH (doesn't care about the rest). [snip]

 

[CBS]

CBS you wrote earlier:

A very real concern that I see running through the recent activity on this thread is that those amongst us who are the worst off are concerned that all recommendations acknowledge and take into account and respect their experience and lessons hard learned (often through being pushed into overexertion or doing so of their own volition - my own story).

I would hope that along the way we can give those amongst us with different experiences and perhaps less severe symptoms the same respect.

I don't know where this came from, as I saw no one negating the experiences of the less severe.

<snip>

Though severe people face particular issues, some of their experiences are very similar to the milder. All people with ME/CFS have limits to their activities, people cannot get themselves better through GET, and everyone wants proper research so we can get proper treatments.

But sometimes less severe people down play the concerns over exercise a bit, possibly just because they feel they can do a bit of exercise, or they think comments about exercise phobia and the like "obviously" don't apply to them, they can come across as dismissive of the concerns of the more severe. (I have come across this a lot elsewhere and find it disturbing)

But I am afraid that Cort (and sorry to name you Cort but it is going to be obvious to whom I am referring so I may as well come out and say it) is coming across as disregarding what long term and severe people are telling him, both about what the research is telling us, what their personal experience has thought them, as well as what some of us involved in groups for years have learnt from the experience of others.

This is in spite of his own admited lack of experience of this area, and his obvious lack of knowledge/understanding of the research into CBT/GET (I realise Cort that you may have focused on learning about other things, and that is fine, but don't then try to off-handly brush aside what knowledgable people like TomK are trying to say).

Gerwyn and Tom have pointed out multiple times (both here and elsewhere) that there is no evidence that GET works or that patients increase their activity on GET programmes. This has been admitted by its proponents. Mithriel has pointed a few times to the issue of context, which is critically important. (That is the context in which doctors are picking things up, and likely to read things etc.)

There is no evidence that severe patients can increase functionality through exercise.

I am afraid Cort that there is no point (or relevance) in deciding that you think that the sections on the severe are ok, if the severe people are saying it is not, and explaining why. No amount of comments along the lines of "it looks ok to me" (not an exact quote!) is going to make it any better.

I think part of the problem might also be the lack of awareness of the actual lives people lead when they are severe. The more severe a person is the more vulnerable they are to the whims of others, the less power they have and the less choices they have.

There is no point in talking in an abstract way about patient choice, the patient right to refuse exercise and the like, when they are living in a situation where they cannot make free choices. We've probably all experienced a degree of coercion and being forced/pressurised into doing things harmful to us, but the more severe a person gets the more this seems to happen. This is one of the reasons why severe people are up in arms about the CME material. As the stuff on the severe is the worst, and even the tone of some of the rest of it is problematic (for everyone but especially the most severe)

Instead of writing out something myself on this issue explaining it I am going to repost something Dr Yes wrote on another thread on this issue to illustrate this point.

I simply can't read your response and not be a bit struck by how you can dismiss Cort's experience so completely and yet you still wonder where my original comment by came from.

 

[Orla]

CBS,

Cort said himself he wasn't severe and admited lack of experience in this area (and his comments indicated this also). Therefore I am not being dismissive of his experience, as he lacks experience in this area, according to himself. This was the point I was making.

I am aware of the different problems people face at different levels of illness, and any level is bad, and I am also acutely aware that anyone can become severe at any time.

I might not have mentioned the issue at all if it weren't for the pages and pages of comments which I felt included ones dismissing what people were trying to tell him.
Orla

 

[CBS]

CBS,

Cort said himself he wasn't severe and admited lack of experience in this area (and his comments indicated this also). Therefore I am not being dismissive of his experience, as he lacks experience in this area, according to himself. This was the point I was making.

I am aware of the different problems people face at different levels of illness, and I am also acutely aware that anyone can become severe at any time.

I might not have mentioned the issue at all if it weren't for the pages and pages of comments which I felt included ones dismissing what people were trying to tell him.
Orla

I read Cort's comments carefully and I feel like many of the criticisms of what he has said seem quite selective (he's been very willing to admit when a word or phrase was not as carefully crafted as it should have been). Honestly, this whole topic has been beaten to death and then some.

No one here is suggesting CBT or GET.

Everyone agrees that recommendations must first and foremost take into account the most ill amongst us.

Recommendations with any potential for harm must clearly state the inherent danger.

All activity must be patient directed.

Now what? More wasted energy?