CDC ME/CFS page, updated 30th May 2017

[Anne]

@medfeb , a bit of an alert (if I'm not mistaken):

I think I just found out something which is a clear loss regarding the CDC website. We (RME, the Swedish ME Association) have a fact sheet regarding impairment and prognosis, where we quote reports, articles and official sites like IOM/NAM, CDC, etc. Link to our fact sheet: http://www.rme.nu/fakta_referenser_prognos.pdf

We have quoted the (previous) CDC website saying:
“CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.” http://www.cdc.gov/cfs/symptoms/index.html

This sentence is now not to be found on the CDC site - or am I missing it?

This is a key sentence which we have used in communication with disability agencies, health care providers, decision makers, etc. It's a shame to see it gone (if I'm not mistaken) and it would be fantastic if they restored it (changing "CFS" to "ME/CFS").

[/USER] FYI

@medfeb , both the sentence now excluded from the CDC site and the NIH sentence about pre-disease functioning are in the IOM report.

From the IOM/NAM report:

"Patients with ME/CFS have been found to be more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease (…) Symptoms can be severe enough to preclude patients from completing everyday tasks, and 25-29 percent of patients report being houseor bedbound by their symptoms."

"Most patients never regain their premorbid level of health or functioning (...) The duration of ME/CFS and the potentially debilitating consequences of symptoms can be an enormous burden for patients, their caregivers, the health care system, and society."

I'm thinking all of the sentences above from the IOM report should be on the CDC site!

PS. I'm of course very happy about many of the changes to the CDC site - even though I focus here on what's missing, I don't mean to sound negative! Very happy about all the improvements and so incredibly grateful for all the hours, days, months, years of hard advocacy work that has brought this about!

Tagging @medfeb and @mango

 

[IThinkImTurningJapanese]

Tai Chi is usually quite bad for many of us who the orthostatic intollerance with this illness as its like standing. I had to give up doing Tai Chi when I got sick with this, I'd done Tai Chi for a couple of years too. I do not think its an appropriate exercise recommendation for us seeing near all of us on testing show symptoms on orthostatic testing.

You've hit the nail on the head.

Tai Chi is the safest exercise for those who are infirm, yet you must stand, calmly.

That is nearly impossible with Orthostatic Intolerance.

You must treat OI first, then Tai Chi can help.

 

[RogerBlack]

Tai Chi is the safest exercise for those who are infirm, yet you must stand, calmly.

I somewhat disagree with this.
There are various forms of exercise done prone, with zero risk of falls.

Though this probably is overkill.

 

[medfeb]

@medfeb , a bit of an alert (if I'm not mistaken):

I think I just found out something which is a clear loss regarding the CDC website. We (RME, the Swedish ME Association) have a fact sheet regarding impairment and prognosis, where we quote reports, articles and official sites like IOM/NAM, CDC, etc. Link to our fact sheet: http://www.rme.nu/fakta_referenser_prognos.pdf

You are right - I think that is missing. They may be planning on adding to the health provider site but it needs to be here as well. I'll add it to the list

 

[TiredSam]

I don't know much about tai chi, but doesn't it involve raising your arms and moving them about? That's one thing that brings on my symptoms in less than 10 minutes, whether it's trying to play darts, trying on shirts in a changing room, washing my hair in the shower ... anything that involves raising my arms and moving them about is to be avoided if at all possible, so I don't think tai chi would be for me.

 

[alex3619]

anything that involves raising my arms and moving them about it to be avoided if at all possible, so I don't think tai chi would be for me.

I had to give up putting clothing on a washing line, now I use a dryer even though I hate using electricity when the sun should suffice.

I tried Tai Chi multiple times when I was only a mild patient. I always got worse.

 

[Hutan]

I had to give up putting clothing on a washing line, now I use a dryer even though I hate using electricity when the sun should suffice.

There is the option of fold-out drying racks - not great for unwieldy large items like duvet covers, but fine for clothes. Cheap and effective when the sun is shining.

 

[IThinkImTurningJapanese]

I somewhat disagree with this.
There are various forms of exercise done prone, with zero risk of falls.

Though this probably is overkill.

Thanks for putting a smile on my face in the morning ,

that thing looks like a Medieval Rack .

I'm curious why you think Tai Chi would involve a risk of falling.

 

[RogerBlack]

I'm curious why you think Tai Chi would involve a risk of falling.

Because you are standing up, without support in odd positions, while wobbly (if affected by POTS or 'simple' ME balance issues.
https://www.ncbi.nlm.nih.gov/pubmed/26745400
Is somewhat related. "
Reduced gait automaticity in female patients with chronic fatigue syndrome: Case-control study."

In short - walking is hard often, and we have to think about it a lot more than normal people.

 

[IThinkImTurningJapanese]

Because you are standing up, without support in odd positions, while wobbly (if affected by POTS or 'simple' ME balance issues.

Tai Chi is primarily about practicing balance, you will be less likely to fall with it than without it.

In short - walking is hard often, and we have to think about it a lot more than normal people.

That is quite true and indicative of how serious this illness is, that an activity widely considered safe for the elderly and infirm to engage in can be unreasonable for those with ME/CFS to practice.

 

[me/cfs 27931]

I just wrote to Kaiser Permanente, pointing out that their website ME/CFS recommendations for GET and CBT are now in conflict with the current CDC website.

Also, I pointed out that the CDC cautions on the use of antidepressant for ME/CFS, but the Kaiser Permanente website suggests antidepressants as treatment without cautions.

Kaiser Permanente did their own "stealth update" of the ME/CFS section on their website. GET and CBT aren't promoted quite so strongly, but they are still there. Also, they now use ME/CFS and not "Chronic Fatigue Syndrome", reflecting the CDC switch.

Also, the Kaiser Permanente ME/CFS diagnostic criteria have been updated to be more in line with the CDC (not exactly the same). Also the requirement for "pain" for diagnosis has been removed, which was a change I had requested several times.

I say "stealth update", because Kaiser Permanente still says their website was updated in March 2017, but these changes happened in the past couple weeks.

ETA: Kaiser Permanente acknowledged my email and said a representative will respond to me within 30 days.

 

[taniaaust1]

I don't know much about tai chi, but doesn't it involve raising your arms and moving them about? That's one thing that brings on my symptoms in less than 10 minutes, whether it's trying to play darts, trying on shirts in a changing room, washing my hair in the shower ... anything that involves raising my arms and moving them about is to be avoided if at all possible, so I don't think tai chi would be for me.

I didnt think about the raising arms though thou that has been known to floor me, raising arms is a known POTS trigger.

 

[taniaaust1]

There is the option of fold-out drying racks - not great for unwieldy large items like duvet covers, but fine for clothes. Cheap and effective when the sun is shining.

that's what Im using....if sheets need to be hang on line I have to get another to do it.

 

[taniaaust1]

Tai Chi is primarily about practicing balance, you will be less likely to fall with it than without it.

The issue is in ME that you can practice balance all you like but it does not improve, on your worst days you always will be worst and have worst balance then on a bit better day. In fact just doing Tai Chi cause it can be too much for many of us, can actually make us go downhill and the tai chi can give us WORST balance problems. What helps normal people doesnt necessarily help us with things.

I also had an odd issue appear during a Tai Chi session after I got ME, I suddenly developed a huge painful knot in my back during a Tai Chi session and had to the have weekly massage on it for about 18?mths before it went away. This knot that appeared during the session actually restricted my movement as it gave me pain to twist certain ways.

I was going to go back to doing Tai Chi after that knot went away but by then I had developed orthosaticc intollerance issues and couldnt do Tai Chi due to that (as another said raising arms is also a trigger of some OI issues)

 

[mango]

The issue is in ME that you can practice balance all you like but it does not improve, on your worst days you always will be worst and have worst balance then on a bit better day. In fact just doing Tai Chi cause it can be too much for many of us, can actually make us go downhill and the tai chi can give us WORST balance problems. What helps normal people doesnt necessarily help us with things.

So true, this has been my experience too. Could say the same for yoga as well.

 

[trishrhymes]

For me, the idea of adding any exercise based activity into my life, be it yoga, Tai Chi or Pilates, is a complete non starter.

For all the years I was mildly effected, I was holding down a part time teaching job and raising kids as a single parent - and going to bed every night nearly weeping with exhaustion, nausea and pain. Since I've slid downwards through moderate to fairly severe, I've still had a home to run (with some paid help) and a sick daughter to care for.

Throughout all those years I have always had to do more than my body told me was sensible, hence the frequent relapses and decline.

Adding an extra exercise regime, however gentle would necessitate cutting something out, and I've never had the luxury of being able to do that.

I suspect this applies to most people with ME. We already live to our limits and often tip over them anyway.

While I was still working my GP sent me to a hospital based OT run group for fibromyalgia sufferers. The OT was very keen to teach us Pilates, which in theory was a good idea, focusing on core strength and mostly horizontal exercises, but made no concession to the 2 of us in the group who also had ME. It made me crash badly and I had to drop out. I could not afford the time off work. End of experiment.

I think Tai chi would be the worst of these types of exercise because it's all done standing, which many of us can't do for more than a few minutes even when mildly effected. Add in a bit of standing on one leg, and raising arms above the head and we'd all be toppling over. It may be slow gentle exercise for healthy people, but it would be torture for most of us, I think.
.

 

[me/cfs 27931]

After roughly 10 relapse/remission cycles over the past 40 years, I can definitively say (for me only) that mild to at times even moderate exercise is beneficial during remission. However, anything but the mildest exercise and stretching is harmful during a relapse.

While I've always had some degree of orthostatic intolerance, it's only been a consistently major issue for me in the past 5 years.

 

[BurnA]

I can definitively say (for me only) that mild to at times even moderate exercise is beneficial during remission.

This makes sense if you are in remission, but was the Tai Chi recommended for people in general or in remission?

 

[AndyPR]

CDC Removes Reference to Disputed ME/CFS Therapies From Website
The agency has long recommended two controversial treatments for chronic fatigue syndrome. Earlier this month, it quietly made some changes.

For years, the U.S. Centers for Disease Control and Prevention recommended two controversial treatments for ME/CFS, the illness often known as chronic fatigue syndrome: a program of steadily increasing activity, and a specific form of cognitive behavior therapy. In early July, the agency removed information about the two treatments from the main section about the illness on its website — a move hailed by patients and advocates who had long fought for the change.

“It’s really, really significant,” said Mary Dimmock, a former pharmaceutical scientist and business analyst who turned to advocacy after her son became severely ill. The CDC’s recommendations influence medical treatment not only in the U.S. but around the world, noted Dimmock.

British psychiatrists and other experts developed the two therapies decades ago. According to their theory, these patients suffer from severe deconditioning and a misconception that they are medically sick; to get better they need to increase their levels of activity. An influential study called the PACE trial, the largest ever for the illness, reported from 2011 onwards that patients improved and could even recover from the two treatments.

But patients and advocates have long argued that the science is deeply flawed and that too much exertion can be harmful, as reported in an Undark investigation last fall. In particular, the PACE trial has come under intense international criticism for data manipulation and other serious methodological lapses.

https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/

 

[AndyPR]

Blog about the changes

In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website.

In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now ME/CFS by CDC. This new website, intended for the general public, is a significant improvement over the previous site. An update for health care providers is planned for the fall. Together, these could begin to change the medical misunderstanding and mistreatment that people with ME have had to endure. But CDC will need to do more – both on its website and in dissemination to the medical community – if ME patients are to get the clinical care they need and deserve.

Back Story

For at least a decade, patients, advocates, disease experts, and members of Health and Human Service’s (HHS) CFS Advisory Committee (CFSAC) have highlighted serious concerns with CDC’s CFS website. Inappropriate information included the disease description, the name, the recommended diagnostic criteria, suggestions of a psychogenic basis, and the treatment/management recommendations, which have included those for graded exercise and cognitive behavioral therapy (CBT) based on a psychogenic view of the disease.

The feedback resulted in some website changes. However, CDC did not remove the contentious CDC CFS Toolkit in spite of a June 2012 CFSAC recommendation to do so. Claims that child abuse was a risk factor remained, despite strong criticism of the methods used in the supporting study. CDC also continued to recommend CBT and graded exercise therapy (GET) as management approaches in its CFS Toolkit, in its continuing medical education (CMEs), and on its CFS website, directly supported in places by studies like the PACE trial.

http://occupyme.net/2017/09/21/cdc-website-update/