My letter to the CDC concerning Kaiser Permanente still recommending GET

He (et al) did say that "many sufferers have been told that physical and mental exertion is to be avoided....This may be correct in some cases, but there is as yet no way that these cases can be identified. In general such advice is counterproductive, and must be set against the following...."

To say that the allegation "may be correct in some cases" does not appear to me to be raising the possibility in order to dismiss it.

Perhaps it was something else that was being considered.
 
chrisb said:
To say that the allegation "may be correct in some cases" does not appear to me to be raising the possibility in order to dismiss it.
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His following sentence is already dismissing it: "In general such advice is counterproductive, and must be set against the following...." Do you have the link to the paper?
 
Valentijn said:
His following sentence is already dismissing it: "In general such advice is counterproductive, and must be set against the following...." Do you have the link to the paper?
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To say that something is "in general" counterproductive, is to admit that in some cases it may be correct. One cannot base a treatment regimen solely on the general. The effects on specific cases have to be addressed.

http://bjgp.org/content/bjgp/39/318/26.full.pdf
 
I visited the dentist yesterday and had some retained roots removed. I had to sign an A4 sized consent form listing all possible " risks" ( that was the word used), and how frequently they occurred e.g. Rarely, very uncommon, small risk etc. I was given a copy to take home with me.

While it is obviously preferable to have GET removed on the grounds that it is unsafe, I wonder if there is any mileage in insisting that if GET is retained, formal signed consent must be obtained listing all possible risks to bring it in line with other medical treatments. I am not advocating this as preferable just as a back up if we can't get GET removed.

See @chrisb above. In general dentistry is safe but in specific cases there are risks and patients have to actively consent to take them.
 
chrisb said:
To say that something is "in general" counterproductive, is to admit that in some cases it may be correct. One cannot base a treatment regimen solely on the general. The effects on specific cases have to be addressed.
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His failure to use a complete absolute is not a concession that he believes exercise may ever be harmful to ME/CFS patients. Here's the full context of that passage:
You have had an acute illness, probably infectious in origin, which forced you to become inactive for a period of time. Subsequently you have begun to experience fatigue on exertion and as a result you have started to limit or avoid activity of all sorts. Thus, you begin to experience symptoms whenever you attempt activities but never pursue them long enough to allow the symptoms to subside. At the same time there is a loss of tolerance to everyday activity owing to your increasing unfitness and poor cardiovascular condition. This means that you develop symptoms at increasingly lower levels of exercise, and find activities previously undertaken extremely difficult, if not impossible.

When you experience these symptoms, you have also experienced associated thoughts, such as 'If I carry on I may become worse', or 'There must be something seriously wrong with me to make me feel like this'. These symptoms are real, but unaware of their origin, you may have incorrectly attributed them to a recurrence of the original infection. This is particularly likely because the symptoms of muscle pain, breathlessness, dizziness, fatigue and others are similar to those experienced initially. This has led to a vicious circle of increasing avoidance, inactivity and fatigue.

The evidence to support this second hypothesis should be shared with the patient. Many sufferers have been told that 'physical and mental exertion is to be avoided' (ME Action Campaign factsheet, 1988). This may be correct in some cases, but there is as yet no way that these cases can be identified. In general such advice is counter-productive, and must be set against the following:
- the harmful effect of disuse and inactivity on muscle function, in addition to respiratory and cardiovascular performance;'
- the psychological benefits of exercise on emotional disorders;'
- the adverse psychological effects of lack of exercise;'
- the deleterious psychological effects of avoidance of feared situations, as in agoraphobia;'
- recent evidence that dynamic muscle function is normal in patients with chronic fatigue syndrome, muscles being neither weak nor fatiguable.
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His "maybe exercise should be avoided" statement is about as meaningful as conceding that "maybe aliens cause ME", because anything is possible. I really don't see the point of trying to nail him down with this statement. It would never stick as an admission of knowingly causing harm, and it's far enough out of context that it doesn't make sense to use it to argue anything else either.
 
Many sufferers have been told that 'physical and mental exertion is to be avoided' (ME Action Campaign factsheet, 1988). This may be correct in some cases, but there is as yet no way that these cases can be identified. In general such advice is counter-productive, and must be set against the following:
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This statment by SW acknowledges that there may be some cases where exertion is to be avoided; no ambiguity. He also confirms no one has any idea who these people are; no ambiguity. He also says that in general such advice is counterproductive, tacitly acknowledging therefore that in some cases such advice is potentially valid; not knowing how severe the effects of exertion might be for these unknown but acknowledged individuals.

I personally think this shows his callous attitide, that even though he has no way of knowing (and admits it) how many people will be adversely affected by exercise to an unknown severity, his insistence his approach is nonetheless right and they are in effect a sacrificial necessity for his greater good.
 
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Barry said:
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I personally think this shows his callous attitide, that even though he has no way of knowing (and admits it) how many people will be adversely affected by exercise to an unknown severity, his approach is nonetheless right and they are in effect a sacrificial necessity for his greater good.
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It would be interesting if after 3 decades claiming to be the expert in the field he still has no figures on adverse affects, data aimed at testing the possibility of adverse affects or a single piece of feedback of such.

It really shows how they design their trials and what data they prefer to collect.
 
People will make up their own minds about the interpretation of that paper by Wessely at al.

I would just put it into context. The paper was published in 1989. This is around the time that both Wessely and White published papers discussing chronic fatigue in terms of neurasthenia, admitting that either 28% or a third of sufferers (depending on the paper) did not have a psychiatric diagnosis. It is also at this time that organisation must have been put in hand for the meeting (in March 1990) leading to the Oxford criteria.

Why would anyone, knowing of a possibility that some people might be best advised to avoid exertion, but not knowing how to identify such people, agree to reclassification of the research criteria in such a way as to make that identification more difficult?
 
chrisb said:
People will make up their own minds about the interpretation of that paper by Wessely at al.

I would just put it into context. The paper was published in 1989. This is around the time that both Wessely and White published papers discussing chronic fatigue in terms of neurasthenia, admitting that either 28% or a third of sufferers (depending on the paper) did not have a psychiatric diagnosis. It is also at this time that organisation must have been put in hand for the meeting (in March 1990) leading to the Oxford criteria.

Why would anyone, knowing of a possibility that some people might be best advised to avoid exertion, but not knowing how to identify such people, agree to reclassification of the research criteria in such a way as to make that identification more difficult?
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The 28% figure from one of their catch all fatigue cohorts was probably 100% ME, the other 72% would have been a rag bag of fatigue people and probably even included people like the Georgia cohort from the CDC cold calling telephone survey, who may have answered yes to, "do you feel fatigued", to a random caller asking them stupid questions.
 
Just an update on my complaint filed with the California Department of Public Health (CDPH) regarding Kaiser Permanente continuing to recommend GET for ME/CFS.

It's been a month of CDPH saying "Someone will reply to you within 2 business days."

When I don't get a reply as promised, I contact CDPH again.

CDPH says "Someone will reply to you within 2 business days".

So I contact CDPH again and ask why I haven't gotten a reply.

"Someone will reply to you within 2 business days"

This cycle has gone on for a month now. Still no reply.
 
Webdog said:
Just an update on my complaint filed with the California Department of Public Health (CDPH) regarding Kaiser Permanente continuing to recommend GET for ME/CFS.

It's been a month of CDPH saying "Someone will reply to you within 2 business days."

When I don't get a reply as promised, I contact CDPH again.

CDPH says "Someone will reply to you within 2 business days".

So I contact CDPH again and ask why I haven't gotten a reply.

"Someone will reply to you within 2 business days"

This cycle has gone on for a month now. Still no reply.
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So they are hoping you will go away. Is there a higher up you can contact in the organization (such as an ombudsman) or governmental entity?
 
Alvin said:
So they are hoping you will go away. Is there a higher up you can contact in the organization (such as an ombudsman) or governmental entity?
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If I knew such a person, I would contact them.

Edit: Right now, I'm wondering whether it's worth using more of my limited energy on this sisyphean task at the state level. Or is it better to wait for the new CDC materials, which should come out soon?
 
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Looks like I forgot to include another reply I got a while back from the CDC, so I'll post it now.
CDC said:
From: cfs @ cdc.gov
Date: Thu, 01 Feb 2018

Dear xxxxxxxxx,

Thank you for your message. CDC is preparing educational materials and website content for healthcare providers that addresses diagnosis and clinical care of patients with ME/CFS. Your comments will help inform those processes as well as ongoing communication with clinicians.

Sincerely,
ME/CFS program
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Note that there is a "cfs @ cdc.gov" email address. Shhhh. :jawdrop:

The CDC certainly is taking their time preparing the new materials. They've gotten good input from what I've seen. Hope they get it right, and it comes out soon.
 
Webdog said:
If I knew such a person, I would contact them.

Edit: Right now, I'm wondering whether it's worth using more of my limited energy on this sisyphean task at the state level. Or is it better to wait for the new CDC materials, which should come out soon?
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You will have to decide that, i heave learned the hard way i would not be able to anymore, but you know your abilities and limits better then any of us
That said there is probably someone else at the company you can contact but i wish i could steer you to that person(s). Are you a customer of theirs?
 
@Webdog , you could send one additional letter noting it is your 4th (or whatever) iteration, only cc it to your Congressional Representative, and let them see that cc. That might get their attention.

I don't think I'd care for that stress, personally, so I wouldn't blame you if you opted against it - I am only suggesting it as a possible course of action.
 
Webdog said:
I'm convinced you are correct: GET harm is the key. PACE has been discredited, but that isn't enough.

We need an official statement that GET can cause patient harm. In my email to Healthwise, the evidence I used was a quote from the New York State Health Commisioner, Howard A. Zucker, M.D., J.D.:


But Healthwise didn't seem to acknowledge the authority of a state health commissioner.

The IOM report never directly discussed the dangers of GET. And so far, the CDC has been mostly silent on this topic as well.

In my opinion, we need the CDC (or NICE) to step up to the plate and make a statement about potential harms from GET for ME/CFS patients. Perhaps (very optimistically) the CDC will include a GET warning when they update their guidelines for healthcare professionals.
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Hi @Webdog any chance you could post a link to that letter?
 
NelliePledge said:
Hi @Webdog any chance you could post a link to that letter?
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I've attached a PDF of the NY State Health Commissioner letter from last May (it's the second half of the letter).

Cort also wrote an article about it:

https://www.healthrising.org/forums...out-for-chronic-fatigue-syndrome-me-cfs.5417/

PS: I finally got a phone call back from the California Department of Public Health regarding my complaint about Kaiser Permanente recommending GET for ME/CFS. They apologized profusely for the long delay in getting back to me. I verbally restated my case, and now we shall see if anything happens.
 

Attachments

Response from the California Department of Public Health yesterday, after more than a month of emails and phone calls. Basically, "it's not our job, please contact another government agency".

If the CDC had sent me to the correct state department, it would have saved a lot of time. :rofl:
California Department of Public Health said:
Subject: Response to your inquiry to the California Department of Public Health (CDPH)
Received: March 1, 2018

Hi xxxx,

It was nice speaking to you on the phone Tuesday and learning more about your cause.

I spoke with my management and shared the request you submitted with them and they believe that it would best be handled by the Medical Board of California. The reason being is that it is a scope of practice issue.

The Medical Board of California’s phone number is (916) 263-2382. You may access their website at: http://www.mbc.ca.gov/

I hope this information is helpful to you. Again, I apologize for our delay in responding to your inquiry.

Thank you,
Susan

Susan Kent
Center for Health Care Quality
California Department of Public Health
(916) 322-8491
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Additionally, I recently spoke in person with a longtime California lobbyist. He told me the correct contact is the California Department of Managed Healthcare. So that's another state agency to follow up with.

Good thing I have tons of energy and no brain fog, or this might be a challenge for me. :cautious::dead:
 
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