CDC ME/CFS page, updated 30th May 2017

Anne

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I agree that this seems to be a substantial improvement, but the following concerns me:

On the Symptom page (https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html) they acknowledge that PEM is a core symptom.

But on the main page (https://www.cdc.gov/me-cfs/index.html), they still say:

"ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM)." (my bolding)

- So it would seem that the CDC still isn't acknowledging that PEM is a mandatory symptom for ME/CFS? Sigh.

Tagging @mango and @medfeb

PS. Also: still using "illness", not "disease".
 
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medfeb

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I agree that this seems to be a substantial improvement, but the following concerns me:

On the Symptom page (https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html) they acknowledge that PEM is a core symptom.

But on the main page (https://www.cdc.gov/me-cfs/index.html), they still say:

"ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM)." (my bolding)

- So it would seem that the CDC still isn't acknowledging that PEM is a mandatory symptom for ME/CFS? Sigh.

Tagging @mango and @medfeb

PS. Also: still using "illness", not "disease".
I agree. That ambiguity is concerning to me as well and I will include in feedback to CDC. Also, that sentence doesn't convey the fact that people with ME can get worse even with just the most basic activities of daily living.

I'd really appreciate any other comments that people have
 

mango

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@medfeb My main comments would be the same as the ones I have regarding the IOM/SEID description of the disease.

I'm severely ill. Several of my most disabling symptoms and issues seem to be missing from these descriptions, such as severe neurocognitive issues (extreme cognitive exhaustibility, extreme sensitivity to lights, sounds, movement and vibrations, my ability to speak is severely affected etc), neuroendocrine problems (my body can't handle high or low temperatures, hands and feet are always super cold, massive weight changes especially at onset etc), as well as vision-related problems (double or blurry vision, problems focusing and adjusting/keeping depth of focus etc), heart palpitations, balance issues, problems coordinating muscles/body movements etc etc etc.

In my experience, if it’s not "in the book”, doctors and others are less likely to respect our needs, less likely to address them… not even “small” things like, for example, not expecting patients to sit on a chair (despite severe orthostatic intolerance) in a very noisy, sharply lit waiting room with lots of other people for a long time, waiting to be called in.

I'm not so sure a person, whose only knowledge of the disease is the info on these pages, would "recognize ME/CFS" if they met me. I doubt that they would imagine someone like me, my situation,... I understand, of course, that they can't list all the possible symptoms here, nor accurately convey how severe they can be. I guess I'm just wishing that the description wasn't so... "sugar coated"?

Also, in the SEID clinicians' guide there's no description or example of what the most severe kind of ME/SEID might look like, and I couldn't find it on the CDC pages either. I feel very strongly that this should be added.

ETA: I agree with Anne's comments above.

ETA: I forgot to mention vertigo! That's a massive issue for me, a huge part of PEM.
 
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Neunistiva

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that sentence doesn't convey the fact that people with ME can get worse even with just the most basic activities of daily living.
But there are other parts that do:

"
  • Attending a child’s school event may leave someone house-bound for a couple of days and not able to do needed tasks, like laundry.
  • Shopping at the grocery store may cause a physical crash that requires a nap in the car before driving home or a call for a ride home.
  • Taking a shower may leave someone with severe ME/CFS bed-bound and unable to do anything for days.
"
and

"ME/CFS changes people’s ability to do daily tasks, like taking a shower or preparing a meal."
 

Hutan

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Treatment section:
Complimentary - yoga is in list of things that may improve energy and decrease pain. Not regular yoga as the public knows it to be. Downward dog would kill most of us, I imagine.

Adding stretching would be good though.
Yes. They also mention tai chi. Coincidentally yesterday someone on PR mentioned that they had collapsed doing tai chi due to orthostatic intolerance. The slow, upright movements and held poses aren't great for many of us. And coincidentally, yesterday also, a relative sent me an email saying how wonderfully energising tai chi was and how there were old people and disabled people all finding it great and therefore how it could help me. It's the sort of thing that people think should help - but it may not. The impact of the effort used to get to the class needs to be remembered too.

I think the CDC's recommendations around exercise need to be more nuanced. Just adjusting this sentence from their Treatment page for Children so that it applies to adults too and adding it to the main Treatment page would help.

... children with ME/CFS should avoid activity that makes their symptoms worse.
That's fine tuning though. The web pages as they are now are a major step forward, a big improvement on what was there before. Thank you CDC.
 

Cinders66

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@medfeb My main comments would be the same as the ones I have regarding the IOM/SEID description of the disease.

I'm severely ill. Several of my most disabling symptoms and issues seem to be missing from these descriptions, such as severe neurocognitive issues (extreme cognitive exhaustibility, extreme sensitivity to lights, sounds, movement and vibrations, my ability to speak is severely affected etc), neuroendocrine problems (my body can't handle high or low temperatures, hands and feet are always super cold, massive weight changes especially at onset etc), as well as vision-related problems (double or blurry vision, problems focusing and adjusting/keeping depth of focus etc), heart palpitations, balance issues, problems coordinating muscles/body movements etc etc etc.

In my experience, if it’s not "in the book”, doctors and others are less likely to respect our needs, less likely to address them… not even “small” things like, for example, not expecting patients to sit on a chair (despite severe orthostatic intolerance) in a very noisy, sharply lit waiting room with lots of other people for a long time, waiting to be called in.

I'm not so sure a person, whose only knowledge of the disease is the info on these pages, would "recognize ME/CFS" if they met me. I doubt that they would imagine someone like me, my situation,... I understand, of course, that they can't list all the possible symptoms here, nor accurately convey how severe they can be. I guess I'm just wishing that the description wasn't so... "sugar coated"?

Also, in the SEID clinicians' guide there's no description or example of what the most severe kind of ME/SEID might look like, and I couldn't find it on the CDC pages either. I feel very strongly that this should be added.

ETA: I agree with Anne's comments above.
I completely agree
The new CDC page is a huge improvement from before but there's too little about severe forms. This is a general issue we have - the ICC criteria pretty much ignored severe ME as did the IOM stuff. Maybe it's because many Drs involved in advising on these matters rarely see the severe who can't attend Drs office and also many patient campaigners with clout are the ones who are mobile and active so the severe aren't their priority. The focus is also on dealing with the newly ill who typically haven't fallen yet but obviously some do hit severe early.
I totally agree There needs to be representiom of, information and guidance on all severities, the IACFSME primer is reasonable on the severe though and I believe CDC link to that.
 

taniaaust1

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Hi all, if u dont know what has occurred, read http://forums.phoenixrising.me/inde...r-trial-by-error-the-cdc-drops-cbt-get.52748/ .

Anyway, so Ive been looking over the CDC website to see how it is now.. and their treatment section will amaze you to see how correct it now is https://www.cdc.gov/me-cfs/treatment/index.html CBT gone!! GET gone!!! plus there is now warnings on anti depressants for us etc

BUT I can still see one very bad advice still in it which im wondering if anyone can work with the CDC to help them fix it. In their sleep treatment they say "
  • Limit daytime naps to 30 minutes in total during the day."

Anyone who has severe ME/CFS or crashes very badly will know that a 30min nap does NOTHING and in this situation the person may even need to be sleeping all day or even for several days to try to come out of a bad crash. So I personally think this poor bad advice should be removed.

Who's working with the CDC?
 

AndyPR

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Guiding the lifeboats to safer waters.
In America, the Centers for Disease Control and Prevention (CDC) has updated its website information for ME/CFS, improving diagnostic criteria and removing previous recommended treatments – CBT and GET.

While it seems that we must wait to see if this new information is reflected in updated guidance for medical professionals, it is nonetheless being heralded as an important development.

Yesterday, in the UK, NICE published its consultation document which confirmed the recommendation to take no action with regards to the current guideline.

The ME Association is protesting this decision and is currently considering its written response as a stakeholder in the consultation process.

We feel there are many aspects of the current guideline that warrant review including the continued recommendation of CBT and GET.
http://www.meassociation.org.uk/201...ecommended-treatments-for-mecfs-11-july-2017/
 

Daisymay

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@medfeb My main comments would be the same as the ones I have regarding the IOM/SEID description of the disease.

I'm severely ill. Several of my most disabling symptoms and issues seem to be missing from these descriptions, such as severe neurocognitive issues (extreme cognitive exhaustibility, extreme sensitivity to lights, sounds, movement and vibrations, my ability to speak is severely affected etc), neuroendocrine problems (my body can't handle high or low temperatures, hands and feet are always super cold, massive weight changes especially at onset etc), as well as vision-related problems (double or blurry vision, problems focusing and adjusting/keeping depth of focus etc), heart palpitations, balance issues, problems coordinating muscles/body movements etc etc etc.

In my experience, if it’s not "in the book”, doctors and others are less likely to respect our needs, less likely to address them… not even “small” things like, for example, not expecting patients to sit on a chair (despite severe orthostatic intolerance) in a very noisy, sharply lit waiting room with lots of other people for a long time, waiting to be called in.

I'm not so sure a person, whose only knowledge of the disease is the info on these pages, would "recognize ME/CFS" if they met me. I doubt that they would imagine someone like me, my situation,... I understand, of course, that they can't list all the possible symptoms here, nor accurately convey how severe they can be. I guess I'm just wishing that the description wasn't so... "sugar coated"?

Also, in the SEID clinicians' guide there's no description or example of what the most severe kind of ME/SEID might look like, and I couldn't find it on the CDC pages either. I feel very strongly that this should be added.

ETA: I agree with Anne's comments above.
Very good points Mango, there really should be information about the severely affected in all these guidelines (IOM too). As usual they get missed out not least because they are hardly ever included in any research, a scandal in itself.

And also guidelines need to clearly point out how overexertion can push people into such severe states and therefore the importance for doctors/family/employers not pushing patients to function beyond their capabilities.
 

Rooney

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I dislike that speaking to a therapist with coping/family is in the treatment section. I feel it is a holdover from CBT. I tried, but don't have the energy to compare it to MS language with the CDC. Instead, indicate that families/friends should help the patient rest by picking up the slack of daily chores. Ask what the patient needs help with.

Until counselors are trained in our disease, it may backfire. I experienced this personally when I first became ill 15 years ago. After six sessions, I brought in my charming, long-term boyfriend who stated "She doesn't do anything all day". The response was "REALLY???". It was a disaster; what more can I say.

At least move therapist reference out of the Treatment heading. I don't believe it's in the IOM.
 
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Starlight

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The new guidelines are an improvement,but I completely agree with those who say they don't go far enough. As a severely affected person I haven't been to the grocery store for 12 years.that would be an amazing treat for me!!. As for the 30 min.nap their advice is clueless. During bad times which are the rule rather than the exception for me I am ready for sleep about 2 hours after I get up.I often sleep for up to 2 hours during the day and by doing so I usually get better sleep at night.rest and sleep is my only mode of recovery at present. I would love if recovery took only a few days from anything.I would gladly do those exchanges for an outing. I think there are many people like myself,housebound and often bed bound .I am thankful if I can cook the simplest meals for myself with a reasonable amount of comfort.

While the new guidelines delighted me at first,they are not good enough.They don't get across the longterm severity of this illness to those who are not personally familiar with it.

The CDC should do an information campaign about the changes they have made so that this becomes common knowledge far and wide.people have suffered for years because of their sloppiness and patients have lost support of their families and friends because of their laxity with regard to the research needed in the face of such illness. I am happy for some of the crumbs but I truly want more of the loaf.
They owe us the whole loaf!