CAA recommends, to me, questionable article on pacing. March 2010

[leelaplay]

I received the CAA newsletter today "March-ing On." In it you will find a recommendation for an article on pacing:

You Matter

A frequent discussion topic on our Facebook page and in other forums is the delicate balance between activity and rest. We've published several articles about this topic over the years, but readers seem to appreciate new insights as often as they're offered. Here's an article from Alex Howard titled, "The Art of Pacing." Alex makes some references to the U.K.'s health care guidelines (NICE), but his extensive list of recommendations may be helpful regardless of where you live.

I was only able to skim it, but what I saw raised grave concerns that the CAA is recommending this.

At the beginning it seems that they are disagreeing in part with NICE and GET. But then throughout the text and the charts of 'recovery stages' they say that recovery is normal and pacing, and attitude, are what facilitate this normal recovery.

Here are the 3 things that jumped out at me:

a) Misery Stage

Many ME/CFS symptoms are experienced pain, physical fatigue, poor sleep, head symptoms, digestive symptoms, flu symptoms, etc.

Energy production is happening but can damage the body because the body is stuck in a state of stress excess free radical damage is occurring (producing symptoms).

If healing, rest and nutrients are not supplied; body goes into adaption phase trading function for existence/self protection.
All of the systems from the crash stage may be involved and at differing stages of recovery.
Immune system may have become chronically out of balance allowing chronic low-grade infections.

Patients have often not fully accepted their illness, they may be resisting, denying and feel very angry and frustrated with the illness.
They can also lack understanding about what may be required for recovery.

So they know what is required for recovery from ME/CFS???!!

Patients are most at risk of not pacing properly but it is a time where learning how to pace becomes critical in order not to return back to chronic crash stages by over-doing it.

b) Reintegration Phase How Chronic Fatigue Syndrome patients recover: the long-term trend is upwards, with natural dips along the way

The diagram on the next page demonstrates how patients generally recover from a chronic illness like chronic fatigue syndrome or ME. Part of the process of recovery is to have blips, which are not to be feared or blown out of proportion. Blips DO happen on the road to recovery, and over time they happen less frequently, are less deep and last for a shorter period of time but they DO happen.

Graph of the Recovery Process from CFS/ME

I'm speechless

c) After treating thousands of chronic fatigue and ME patients for six years intensely at the clinic, we have discovered that pacing, or rather lack of pacing can be one of most significant reasons many patients have a slow or delayed recovery.

 

[cfs since 1998]

Thanks for posting islandfinn.

The “official” figures on recovery from chronic fatigue syndrome and ME range from 10-30%. This is extremely misleading it because gives the impression that there is some biochemical problem that is unfixable, rather than appreciating that in fact patients CAN recover.

So right there on the CFIDS Assocation Website they have published an article that claims CFS is not a "biochemical" problem and patients CAN recover if they merely have the will to do so!

Most common reasons you avoid doing more than you can:

* You simply didn’t believe it was possible to do more – you’ve been ill for so long you “think like a sick person”, even though your body is actually stronger than you realise
* You’re afraid of re-experiencing traumatic incidents from the past where your body was weaker and genuinely “let you down”
* Your illness may allow you to avoid certain life circumstances that are painful or scary to face – getting better means you must face them
* You don’t know what you want to do in life – you’re not sure yet of your “raison d’etre”
* Being numbed out and disconnected from your body and heart/true feelings, which want to do more, but you are living in their head and not listening to these messages

WHAT?!?!

Just WHAT?!?!

...





WHAT?!?!

 

[Kati]

That sounds terrible. Sounds just like my occupational therapist that didn't want to hear about my symptoms but wanted me to focus on activities. GET. Goal setting. Get up early every day and "get going".

While it maybe helpful for some, I'd say for the majority of us, we need competent and specialized health care from specialists that know CFS/ME.

This information from CAA is very very concerning to me and I urge them to review all of it before they put it out there.

Very disappointing.

 

[Navid]

youre not sure yet of your raison detre:Retro mad:

yes because i'm not sure yet of my raison d'etre.. i chose to miss being actively involved in my young son's life for 6+ years. the son i went thru hell and hi heaven to have...but i'd rather spend my days in bed with crushing chest pain and shortness of breath because i don't know what i want to do with my life yet.

i can't believe these insults continue to be hurled at us!!!!! and by groups that are supposed to be advocating for us...what's their excuse this time?

i'm really losing my patience with this kind of crap.:Retro mad:


...

 

[valia]

Wessely, White and Chalder couldn't have done a better job themselves

 

[Tammie]

So, they say ......

" After treating thousands of chronic fatigue and ME patients for six years intensely at the clinic, we have discovered that pacing, or rather lack of pacing can be one of most significant reasons many patients have a slow or delayed recovery."

and then tehy say.....

" Most common reasons you avoid doing more than you can:

* You simply didn’t believe it was possible to do more – you’ve been ill for so long you “think like a sick person”, even though your body is actually stronger than you realise
* You’re afraid of re-experiencing traumatic incidents from the past where your body was weaker and genuinely “let you down”
* Your illness may allow you to avoid certain life circumstances that are painful or scary to face – getting better means you must face them
* You don’t know what you want to do in life – you’re not sure yet of your “raison d’etre”
* Being numbed out and disconnected from your body and heart/true feelings, which want to do more, but you are living in their head and not listening to these messages"

does this not seem like a bit of a contradiction?!!?? you are not getting better bc you are not pacing.....AND....you are not getting better bc you are avoiding doing too much!!!! (ummmm, yeah, that almost makes any sense!)


besides that contradiction, though, is the obvious fact that they are sounding very much like little Wessely and White parrots.....this is supposed to be a grp advocating for us?????what the h&ll is going on here? I have been willing to give them the benefit of the doubt with some other recent issues, but this is inexcusable, esp the part above about being afriad to get better, thinking like a sick person, etc...... and the part where they say: "The “official” figures on recovery from chronic fatigue syndrome and ME range from 10-30%. This is extremely misleading it because gives the impression that there is some biochemical problem that is unfixable, rather than appreciating that in fact patients CAN recover." It most definitely sounds like they are saying that this is NOT a biological illness and if that is the case, they have truly sold out.

Now I am really concerned about what they are going to write re the propsed DSM changes.

Oh and did anyone else catch this - they said, "reasons you avoid doing more than you can" - umm, duh, doing more than you can means that you can't (it is beyond your capabilities!) I think they meant to say more than you think you can, but what they actually wrote is goofy

 

[Jenny]

There was an earlier discussion of this article on this thread:

http://forums.aboutmecfs.org/showthread.php?3007-Pacing-at-different-stages-of-illness

Jenny

 

[Gerwyn]

There was an earlier discussion of this article on this thread:

http://forums.aboutmecfs.org/showthread.php?3007-Pacing-at-different-stages-of-illness

Jenny

Who on earth are the CAA and who published this claptrap.their"data is contrary to all published science Can some one find this fairy story--I thought the CAA were pro ME am I wrong/

 

[anne]

The passage that Tammie highlighted is deeply, deeply unfortunate. Unfortunately we live in a situation where everything our advocacy organizations put out have to scream ORGANIC ILLNESS. And while this is all written with organic illness in mind, it's very easy to read it otherwise.

If someone from the CAA is reading this, please understand: We had on this forum a patient in a nursing home unable to get out of bed with doctors and nurses around his bed yelling at him to get up an exercise. We have people who are withheld things until they can get up, like bedpans--their caregivers think, well, exactly the things this article outlines. The patients are abused, and they get sicker, because of this exact mindset. This article obviously isn't advocating this protocol for those people; however the sort of person who would stand in front a nursing home patient's bed and berate him to get up and walk is not particularly good with nuance.

 

[Orla]

Hi Anne,

<And while this is all written with organic illness in mind, it's very easy to read it otherwise.>

I have to disagree with you there. Alex Howard promotes a rebranded version of the psycho-social school nonsense. I have his book (I didn't buy it!) but haven't had time to read it yet (but have seen others review it). If I get a chance I will review it, but I have too many other things to do at the moment. There are other people who have much better articles on pacing (e.g. Ellen Goudmist, Leonard Jason).

Orla

 

[sarahg]

The passage that Tammie highlighted is deeply, deeply unfortunate. Unfortunately we live in a situation where everything our advocacy organizations put out have to scream ORGANIC ILLNESS. And while this is all written with organic illness in mind, it's very easy to read it otherwise.

If someone from the CAA is reading this, please understand: We had on this forum a patient in a nursing home unable to get out of bed with doctors and nurses around his bed yelling at him to get up an exercise. We have people who are withheld things until they can get up, like bedpans--their caregivers think, well, exactly the things this article outlines. The patients are abused, and they get sicker, because of this exact mindset. This article obviously isn't advocating this protocol for those people; however the sort of person who would stand in front a nursing home patient's bed and berate him to get up and walk is not particularly good with nuance.

If the CAA were to do one thing that would revolutionize the opinion that some patients hold about them- All you have to do is START ADVOCATING FOR THE SICKEST PATIENTS, and stop advocating for only the healthiest patients. Instead of a tiny footnote in the end of articles that says, well yes there are some people that are bedbound and this does not apply to them- advocate for THESE people, these are the people that need your help,these are the people in desperate need of accurate information, these are the people you need to focus on, these are the people who will change public opinion about this disease. It's really that simple.

But that is what I have seen be at the root of a lot of controversy about the CAA, most of their material is aimed at people who are at least marginally, and usually highly, functioning. This is all well and good except for the unignorable fact that not all, possibly not most, of the patients you are supposed to be representing are as high functioning as you portray CFS patients to be. This is at the root of the feeling of betrayal for a lot of people.

I am lucky now that I am functioning at between 20 and 30 on the bell scale (still not great) , but there have been times in the course of this illness I have been much lower than that for long stretches of time and I have to honor that experience, as I live daily with the fear that I will plunge back down into that abyss. A lot the info that CAA puts out just doesn't resonate with people who have gone through the experience of things like being unable to go to to the bathroom or eat without assistance.

 

[anne]

Ah, I didn't know that. I just looked him up. He's a hyponotherapist? What in the heck?

The CAA is in a hard position and has to wear a lot of hats. They have to give patients advice but also constantly be aware of the politics of this disease and the harm those politics can do. They are advocating for us as individuals (and all our variety) as well as advocating for the broader nature of the disease. And sometimes those things come in conflict with each other--this advice might be useful to some people, but it can also result in the worsening of others. You don't ever want to print something that some CFS-is-Deconditioning-and-illness-beliefs guy can wave in front of your face. And they did, here. Not sure of your raison d'etre? Avoiding life circumstances?

This is not....helpful.

 

[alice1]

What a bunch of contradicting crap!
I have no doubt it was patients who mentioned they had to pace themselves.This isn't a discovery it's something we've been doing for years.
Are their no ADULTS left in the medical world.
The knowlege they have is from us not the money wasted studies.

 

[CBS]

Most common reasons why you find it difficult to stop over-doing it:

* See note below for inadvertent omission.

Internal psycho-emotional reasons

* Thinking you simply should be doing more. This could be called shoulding on yourself its a judgemental message from the super-ego (mind) not the truth from your body or heart this is often a trait of the perfectionist personality type
* Stopping activity will mean you may have to face underlying issues of low self-worth all that activity you were undertaking made you feel okay about yourself you were a high achiever type and now this is identity is being stripped away
* Feeling ashamed of being incapable or limited by the illness
* Feeling the need to socialise because of feeling so alone and isolated by the illness, even though the activity with people is wiping you out
* Worried about admitting defeat the illness will overcome you if you stop activity
* Control issues if you let go of control youll never get better or it will take over you forever
* Denial about being ill you havent really come to terms with the fact you have a chronic illness and that you need to limit your activity
* You have trouble being vulnerable and asking for the help you now really need
* You hate the feeling of being bored, trapped, deprived or limited
* Being disconnected or numbed out from your body and your heart/true feelings, which want rest because they live in their head

Psycho-emotional reasons and relationships with others

* Making the time and space for yourself requires a level of assertiveness with friends, family and work colleagues or others, which you find difficult due to your people-pleasing nature, and are scared of being assertive
* Stopping activity that involves looking after others, being responsible for looking after friends and family this was where you were getting your self-worth and identity from you also love and care about people and you dont want to face the fact that you cant look after other people any more
* Friends and family may have expectations of you behaving in the old you way e.g. as the chronic achiever, these expectations may need addressing and facing

Socio-economic reasons

* Difficulty because you have life obligations to look after children, or do a job to make money, or are a carer of relatives (and fund treatment amongst other things)

Because bullshit like this perpetuates the notion that this is a emotionally based disorder from which you could recover if only you had the right mindset. And that notion is giving ammunition to disability services to deny your claim and yet you still have to eat.

 

[Advocate]

If the CAA were to do one thing that would revolutionize the opinion that some patients hold about them- All you have to do is START ADVOCATING FOR THE SICKEST PATIENTS, and stop advocating for only the healthiest patients. Instead of a tiny footnote in the end of articles that says, well yes there are some people that are bedbound and this does not apply to them- advocate for THESE people, these are the people that need your help,these are the people in desperate need of accurate information, these are the people you need to focus on, these are the people who will change public opinion about this disease. It's really that simple.

Go, Sarah!

 

[CBS]

I am having major doubts about supporting the CAA in any fashion. Two days ago I exchanged comments with Oerganix about the CAA and I stated that I was not sure whether the good research they sponsor outweighs the damage done by their statements about CBT/GET.

This article severely tips the balance in the direction of doing more harm than good.

Should the CAA stop trying to position itself as an advocacy group when so many CFS patients are harmed by this type of wishful thinking?

I just want to scream "Please, if you really care, you will stop trying to help me!"

 

[mezombie]

Once more, the CAA just doesn't get it.

I should be used to this by now, but I thought they were actually listening to comments made on PR and making changes.

This is inexcusable.

 

[oerganix]

I have to wonder if this pro-GET/CBT attitude is why they have fudged and delayed in saying what their reaction to and action on the new DSM will be.

This article is another stab in the back.

Will there be another stab in the back when they finally reveal what they plan to say to the DSM revision committee?

We really need a REAL advocacy organization for the very real patients who have this very real illness.

Times up for the psychobabble.

 

[Gerwyn]

Ah, I didn't know that. I just looked him up. He's a hyponotherapist? What in the heck?

The CAA is in a hard position and has to wear a lot of hats. They have to give patients advice but also constantly be aware of the politics of this disease and the harm those politics can do. They are advocating for us as individuals (and all our variety) as well as advocating for the broader nature of the disease. And sometimes those things come in conflict with each other--this advice might be useful to some people, but it can also result in the worsening of others. You don't ever want to print something that some CFS-is-Deconditioning-and-illness-beliefs guy can wave in front of your face. And they did, here. Not sure of your raison d'etre? Avoiding life circumstances?

This is not....helpful.

Who let this babble be published this is acommercial organisations sales pitch can someone tell me who the hell the is the CAA

 

[mezombie]

Gerwyn:

CAA stands for CFIDS Association of America (www.cfids.org)