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America’s Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS (posted by CDC)

ahimsa

ahimsa_pdx on twitter
Messages
1,921
This was posted on the CDC Public Health Matters blog for ME Awareness Day:

https://blogs.cdc.gov/publichealthmatters/2017/05/me-cfs/

A short extract:
What would you do if you were going along with your life, got what seemed like a common, flu-like illness, but never regained your health? What if you couldn’t go to work, care for your family, or even leave your bed for months – or even years – as a result? Perhaps worse – what if this happened to your child? Then imagine doctors saying there is no treatment or cure, or even a known cause for the illness that is upending your life or your child’s. Sadly, this is the reality for many people who have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

ME/CFS affects men, women and children of all races and ethnicities. Between 825,000 and 2.5 million Americans are estimated to have ME/CFS. Yet, this debilitating illness remains largely invisible to most Americans, despite costing U.S. society an estimated $18–59 billion annually in medical bills and lost incomes.

Today, CDC recognizes the 25th anniversary of International Awareness Day for ME/CFS and Fibromyalgia

Also, the photo is a huge improvement from the usual "drowsy-looking person sitting in front of a computer":

Millions-Missing-Atl-Sept-2016.jpg

There's a spot at the bottom of this blog for comments for anyone who wants to do so.
 
Last edited:

adreno

PR activist
Messages
4,841
Today, CDC recognizes the 25th anniversary of International Awareness Day for ME/CFS and Fibromyalgia
Didn't they just cancel all funding for ME/CFS?
 

jimells

Senior Member
Messages
2,009
Location
northern Maine

jimells

Senior Member
Messages
2,009
Location
northern Maine
A 1994 letter is not the same as a letter written in recent times.

It is when patients still receive the same shabby treatment as 20 years ago. As recently as January 2017 I fired my useless primary care provider who *still* insists my illness is "primarily psychological".

Even more recently, three weeks ago I showed up at an appointment with my new PCP (thank god he understands I have a physiologic illness) an hour early due to transportation difficulties. I informed the clinic staff that I needed to lay down, or fall down. Instead of finding a place for me to lay down, they insisted on sending me to the Emergency Room, located in another part of the same building. I reluctantly agreed, since I could see no alternative - sitting up for another hour was definitely not an option. The staff then immediately cancelled my appointment and assigned the slot to another patient.

In the ER I was immediately diagnosed with panic disorder, based on my hyperadrenergic symptoms (note that I neither felt nor displayed any anxiety, fear or panic), and obsessive-compulsive disorder, based on my comprehensive list of symptoms and the use of this forum:
"According to the neurologist's note, the patient does participate in international medical forum discussions with patients and seems to investigate each one of his symptoms to the pathological cause."

(from ER doctor's report)

In the end, this fiasco cost me $40 in transportation costs, a week to recover from the trip, and more psychological rubbish in my permanent file, which will continue to prejudice my care indefinitely into the future - and I never even saw the primary care provider!

And I almost forgot to mention, the ER doc ordered a drug screen without my knowledge or consent, the results of which will also potentially prejudice future care and dealings with the Social Security gatekeepers.

So tell me again how the CDC has changed their 30 year policy of burying the illness, publicly apologized for past abuse, and embarked on a comprehensive program to inform physicians that abusing ME patients will no longer be tolerated.

I fail to understand how people are so easily swayed by a new coat of paint on the same old broken institutions, run by the same incompetent bureaucrats. CDC and NIH have clearly won the public relations campaign, while Ron Davis *still* can't get NIH funding and millions of patients continue to be abused by society and the medical industry every day, in the US and around the world.
 
So we shouldn't praise them for making progress, instead we should always, and only, hold them to account for their deeds of the past? Problem is, you are blaming the people who are in post now for the actions of people who were in post 23 years ago.

Have the CDC historically been crap about ME? Yes, that much is without dispute. Are there signs that things are changing? Yes, there is, and that should be encouraged, without forgetting the harm that has been, and continues to be, caused, by their previous actions.

If all we do is criticise their efforts to improve, what incentive have they got to improve?
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
Its not an either / or situation.

There is room, and a need for, multiple voices.

Multiple voices is the essence of effective advocacy: a collaborative, complimentary voice working the inside policy/makers for their (incremental) change and a critical, adversarial voice from the outside exerting pressure for expeditious change.

The carrot (of compliments) and the stick (of shame) moves the ass much faster.
 

mfairma

Senior Member
Messages
205
I fail to understand how people are so easily swayed by a new coat of paint on the same old broken institutions, run by the same incompetent bureaucrats. CDC and NIH have clearly won the public relations campaign, while Ron Davis *still* can't get NIH funding and millions of patients continue to be abused by society and the medical industry every day, in the US and around the world.

Yup. All they have to do, whether intentionally or not, is just enough to placate patients, which isn't much given our history, and that saps patient desperation to demand more quicker and reinforces "reasonable" advocates who don't demand and who encourage patients to view incrementalism as the best achievable goal. It all feels pretty farcical, debates about whether what we're getting is good or just or enough.
 

Nielk

Senior Member
Messages
6,970
So we shouldn't praise them for making progress, instead we should always, and only, hold them to account for their deeds of the past? Problem is, you are blaming the people who are in post now for the actions of people who were in post 23 years ago.

Have the CDC historically been crap about ME? Yes, that much is without dispute. Are there signs that things are changing? Yes, there is, and that should be encouraged, without forgetting the harm that has been, and continues to be, caused, by their previous actions.

If all we do is criticise their efforts to improve, what incentive have they got to improve?

It is the job of government health agencies to prevent, treat, cure diseases and care for patients. Their staff's salaries are paid by our tax money. This is what they are paid to do.

The CDC and NIH have and continue to grossly neglect ME patients. The CDC employees currently working on ME are not our friends. Dr. Unger has purposefully failed us time and time again.

Writing a May 12 letter is like blowing bubbles in the wind.

We are on a sinking ship with major holes in it. We are very sick. Many of us have died and are currently dying - prematurely - and the captain and the staff are blowing bubbles in the wind!
 

JayS

Senior Member
Messages
195

JayS

Senior Member
Messages
195
That was a long time ago. Fact is Reeves, Straus, Jones are all dead and buried. Times are changing.

Beth Unger's comments at CFSAC about PEM didn't sound like times were changing to me. You did see that the CDC links I posted are current as of today?

BTW James Jones is neither dead nor buried. Still at the CDC, and just one year ago published this CFS paper about 'observed illness characteristics.'

https://www.ncbi.nlm.nih.gov/pubmed/26973437
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
I agree with @ScottTriGuy - We need multiple voices in ME/cfs advocacy!

On the one hand, I am happy for progress. On the other hand, there is not nearly enough. And some CDC sites definitely need updating.

As I said in my first post, there's a space at the end of the CDC blog post for comments. Here's that link again:

https://blogs.cdc.gov/publichealthmatters/2017/05/me-cfs/

I encourage anyone who has the energy to post a comment. Tell the CDC directly the changes that you want to see. I think there are a lot of good points to be made and maybe that would sway someone over at CDC to make some changes.