Chronic Fatigue Syndrome Worse than HIV/AIDS: Plus Five Ways To Have People "Get" ME/CFS

[Cort]

Want people to get that ME/CFS is a serious illness? This post outlines eight ways.

(1) The HIV/AIDS and ME/CFS Patient's Statement

"I can tell you without hesitation, chronic fatigue syndrome is much worse than HIV" HIV/AIDS Patient​

Have them read a recent piece in the Huffington post written by a person with an aggressive form of HIV/AID's who is taking care of his partner with ME/CFS. Despite having a scary form of HIV he wasn't the one he was worried about - he was worried about his partner with the disease with the mild name. [fright]

[/fright]

You see, Franky has lived the majority of his life with a little-understood chronic illness, which relapses and fluctuates without warning. This illness is ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and it is often referred to as the great "invisible disease" of our time. Franky once had to drop out of high school due to the symptoms that hit him as a teenager. He picked himself up, and also without any help from family, he made it through his terrifying wanes of illness....

After his ear surgery, Franky's illness kicked in with the force of a dragon's venom. He had violent thrashing vertigo and seizures, along with bone-crushing pain that spread up and down his every fiber. He could not move without assistance. I had to spoon-feed him, and bathe him. As a person living with HIV, watching the daily suffering of my partner who has chronic fatigue syndrome, I can tell you without hesitation, chronic fatigue syndrome is much worse than HIV. It's unfathomable that his disease is even named something as belittling and dismissive as chronic fatigue syndrome.

(2) Dr. Klimas's Statement

"I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V." Dr. Nancy Klimas​

Then if they still have a "yah but" or are still skeptical - refer them to Dr. Klimas's famous statement from question and answer session on the New York Times

Dr. Nancy Klimas

I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.

(3) The Recent Quality of Life Study

If you still need more ammunition then show them this blog: Chronic Fatigue Syndrome Found Worse Than Diabetes, Multiple Sclerosis, Cancer, etc. which covered a study that found that the quality of life of people with ME/CFS was not just worse but considerably worse than people with other a wide ranges of serious diseases including heart disease and cancer.

(4) The Incredible 1996 Health Status Study

If they're still skeptical show them the results of this eye-opening study - Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups. This study found that ME/CFS patients scored "significantly lower than patients in all the disease comparison groups.... on virtually all the scales".. Those disease comparison groups included, by the way, diseases like congestive heart failure, type II diabetes mellitus, acute myocardial infarction and multiple sclerosis.

(5) Check Out the CDC Economic Losses Study

If they still don't get it then have them check out this CDC study which showed that economic losses due to ME/CFS in the state of Georgia alone are over a $1 billion a year.

If they don't get it after all that consider that their brain-fog is probably considerably worse than yours - and that they may need professional help.

(6) Have Them Watch Unrest

So maybe they don't respond to print. Surely they couldn't resist a good movie. Particularly a Sundance Award winning, Oscar nominated film. Have them watch Unrest and they will surely get it.

(7) Have them watch Jenn Brea's Ted Talk

So they're into action thrillers not documentaries. Ask them if they can hang in there for 17 minutes? Tell them this Ted Talk has been watched almost 2 million times.

(8) The Nuclear Option: The ME/CFS and FM Symptom Thread

If that doesn't work go to the nuclear option - the symptom description thread . This option is not recommended for children, the fragile or people prone to depression. They may never look at you the same again but they will get a good sense of what ME/CFS and/or FM can be like.

• In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms

(9) (Bonus) If They Think You're Just Depressed

Finally if they or anyone else thinks you're just depressed refer them to this blog - How to Prove to Your Doctor You’ve Got Chronic Fatigue Syndrome (ME/CFS) And Are Not Just Depressed - which shows that symptoms of depression are radically different from those of ME/CFS.

Other ways to demonstrate the seriousness of ME/CFS or fix misconceptions about it are welcome!

 

[Dee4dogs]

Want people to get that ME/CFS is a serious illness? This post outlines five ways.

(1) The HIV/AIDS Patient's Statement

"I can tell you without hesitation, chronic fatigue syndrome is much worse than HIV" HIV/AIDS Patient​

Have them read a recent piece in the Huffington post written by a person with an aggressive form of HIV/AID's who is taking care of his partner with ME/CFS. He has the scary aggressive form of cancer but he wasn't the one he was worried about - he was worried about his partner. [fright]

View attachment 595 [/fright]




(2) Dr. Klimas's Statement

"I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V." Dr. Nancy Klimas​

Then if they still have a "yah but" or are still skeptical - refer them to Dr. Klimas's famous statement from five years ago in a question and answer session on the New York Times that she would rather have H.I.V. than ME/CFS. She also her HIV/AIDS patients were significantly healthier than her ME/CFS patients many of whom could not work.

Her statement was in response to a rather heated question asserting that comparing ME/CFS to H.I.V. was ridiculous and alarmist. The question and answer are below.

David (the skeptic)


Dr. Klimas (the expert)



(3) The Recent Quality of Life Study

If you still need more ammunition then show them this blog: Chronic Fatigue Syndrome Found Worse Than Diabetes, Multiple Sclerosis, Cancer, etc. which covered a study that found that the quality of life of people with ME/CFS was not just worse but considerably worse than people with other a wide ranges of serious diseases including heart disease and cancer.

(4) The Incredible 1996 Health Status Study

If they're still skeptical show them the results of this eye-opening study - Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups. This study found that ME/CFS patients scored "significantly lower than patients in all the disease comparison groups.... on virtually all the scales".. Those disease comparison groups included, by the way, diseases like congestive heart failure, type II diabetes mellitus, acute myocardial infarction and multiple sclerosis.

(5) Check Out the CDC Economic Losses Study

If they still don't get it then have them check out this CDC study which showed that economic losses due to ME/CFS in the state of Georgia alone are over a $1 billion a year.

If they don't get it after all that consider that their brain-fog is probably considerably worse than yours - and that they may need professional help.

The Nuclear Option

If you to try one last option - got to the nuclear option - the symptom description thread . This option is not recommended for children, the fragile or people prone to depression but anyone reading it will get a good sense of what ME/CFS and/or FM can be like.

• In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms

(Bonus) If They Think You're Just Depressed

Finally if they or anyone else thinks you're just depressed refer them to this blog -
How to Prove to Your Doctor You’ve Got Chronic Fatigue Syndrome (ME/CFS) And Are Not Just Depressed - which shows that symptoms of depression are radically different from the symptoms of ME/CFS.

Other ways to demonstrate the seriousness of ME/CFS or fix misconceptions about it are welcome! (I'd like to make a list and it in the Resources section).

 

[Dee4dogs]

One of your BEST posts to date!
Life can appear to be difficult, until it becomes difficult.
Thanks Cort!!

 

[Firestormm]

@Cort Neat post. Small correction or two: at the top of your post "He has the scary aggressive form of cancer..." should be HIV, and I think past tense? "Slowly, with the grace of God, I got better!" Sorry to be picky, but it's a good post and I'd like to share

 

[waiting]

Excellent summary!

 

[fdotx]

Thanks Cort - and also for usually inserting a bit of humor in your posts - a laugh is always welcome.

 

[Cort]

@Cort Neat post. Small correction or two: at the top of your post "He has the scary aggressive form of cancer..." should be HIV, and I think past tense? "Slowly, with the grace of God, I got better!" Sorry to be picky, but it's a good post and I'd like to share

Thanks for letting me know!

 

[Cort]

Thanks Cort - and also for usually inserting a bit of humor in your posts - a laugh is always welcome.

Glad to hear it - I agree!

 

[Judi]

An excellent post Cort you hit it out of the ballpark!!!
What will it take for society, the medical community and our government to see the devastating state ME/CFS patients endure? I am in bed reading this, I'm not preparing dinner, feeding and playing with my dogs or engaging in my hobbies. Our suffering is real yet we are humiliated by our doctors and accusations abound. What miracle will have to happen to bring this illness to the forefront?

 

[Cort]

An excellent post Cort you hit it out of the ballpark!!!
What will it take for society, the medical community and our government to see the devastating state ME/CFS patients endure? I am in bed reading this, I'm not preparing dinner, feeding and playing with my dogs or engaging in my hobbies. Our suffering is real yet we are humiliated by our doctors and accusations abound. What miracle will have to happen to bring this illness to the forefront?

We just have to keep pushing - keep getting the word out...

You know what our ace in the hole is? Our numbers. Suzanne Vernon said her experience is that where-ever she go - NIH, conferences - whereever - everybody knows someone with ME/CFS or FM....

We just need to get over the damn hump! Once we do that I'll be we have lots of allies!

 

[Jenny Meagher]

I read this from my Australian bed unable to pursue my career, hobbies, care for my children, maintain friendships etc etc. In Australia, the government spends about 50 cents on research per patient per year! The lack of official recognition occurs across the globe. AND YET we have the numbers on our side. ME/CFS is a high incidence disease. When will our voices reach a critical mass and finally attract the proportionate attention of governments and medical researchers?

 

[Maureen]

Thank you for featuring this article.As a UK severe ME sufferer for 24years,something like this helps those I've tried to explain my"life"to,makes it so much easier.....just wish my bedridden life was,though.....but just like the AIDS sufferers in the past finally broke through,we shall too.....so thanks again Cort,and the two men in the article.We need to hear more like this of people standing up and telling it like it is.

 

[Cort]

I read this from my Australian bed unable to pursue my career, hobbies, care for my children, maintain friendships etc etc. In Australia, the government spends about 50 cents on research per patient per year! The lack of official recognition occurs across the globe. AND YET we have the numbers on our side. ME/CFS is a high incidence disease. When will our voices reach a critical mass and finally attract the proportionate attention of governments and medical researchers?

I think it will happen. I think our numbers and our story will make the difference. I think there are a lot of hidden ME/CFS supporters and patients, actually, out there who will flock to our cause once they realize it's safe...We just need to keep moving forward - as we are....

 

[Cort]

Thank you for featuring this article.As a UK severe ME sufferer for 24years,something like this helps those I've tried to explain my"life"to,makes it so much easier.....just wish my bedridden life was,though.....but just like the AIDS sufferers in the past finally broke through,we shall too.....so thanks again Cort,and the two men in the article.We need to hear more like this of people standing up and telling it like it is.

Thanks Maureen - more stories are coming out all the time. Just in the last month there was that fantastic Brian Vastag letter to Francis Collins which made it into the Washington Post. Here's the Huffington Post running an article that says ME/CFS is worse than HIV/AIDS.....it's another chink made in the wall of ignorance.

 

[Mwasi]

Hello,

I am really "glad" that the comparison with HIV is getting out and specially quotes from doctors or researchers. Let's be frank: even us living with ME have difficulty to be listened or heard by society in general when we try to explain how we feel so bad in our body and so tired to be tired. More and more we get quotes from specialists, more and more WE will be understood!

The comparison hit me. I worked many years in the 90' when people died everywhere in the world of HIV/AIDS. It reminds me that very sad period and how much people suffered a lot...

Now living with fibro and ME, I recognize myself in that quote of Dr. Klimas.

Thanks for that forum, it's wonderful to be able to express freely

 

[ScottTriGuy]

Thanks for sharing this Cort.

As someone who has been HIV+ for 17 years I can testify that the m.e. I've been dealing with since Aug 2012 has had a far greater negative physical impact on my health and body than HIV. I'm also a passionate triathlete, having competed at the world age group champs 3 times - since my latest m.e. relapse almost 8 months ago, I've not been able to swim, bike, run. HIV has never debilitated me to even a fraction of m.e.

In terms of how to get more awareness / funding / research for m.e., in the '80s the HIV/AIDS community response ultimately had to overcome gay stigma and AIDSphobia to get action. Quickly they found that shame was the most effective strategy to effect change. Shaming of politicians, regulators and others that hold the power of others' health in their hands saved millions of lives throughout the world. Today HIV is a chronic, manageable illness. Researchers expect a cure within 10 years.


We have growing literature of me/cfs research to back up our physical symptoms. Now is the time to leverage that power against those that impede our path to health. Shame is an approach to be included with other, softer pressures.

An approach may include a class action law suit. This would highlight the negligence ("there is nothing wrong with you") and harm (GET therapy) done to us, gains media attention, legitimatizes and validates our experiences, and threatens corporations' social positioning as good corporate citizens as well as their bottom line.

Just my thoughts, but as you can probably tell, I'm disappointed by the incompetence and ignorance of the allo medical system around me/cfs and traumatized by the harm (I do not use those terms lightly) they have done to me. It is a wrong that needs to be righted.

If only I wasn't so sick and tired, I could be more proactive - but as many of you know from your own lived experience, much of our time / energy, and money, is spent on trying to be minimally functional.

 

[Cort]

Hello,

I am really "glad" that the comparison with HIV is getting out and specially quotes from doctors or researchers. Let's be frank: even us living with ME have difficulty to be listened or heard by society in general when we try to explain how we feel so bad in our body and so tired to be tired. More and more we get quotes from specialists, more and more WE will be understood!

The comparison hit me. I worked many years in the 90' when people died everywhere in the world of HIV/AIDS. It reminds me that very sad period and how much people suffered a lot...

Now living with fibro and ME, I recognize myself in that quote of Dr. Klimas.

Thanks for that forum, it's wonderful to be able to express freely

Thanks for sharing this Cort.

As someone who has been HIV+ for 17 years I can testify that the m.e. I've been dealing with since Aug 2012 has had a far greater negative physical impact on my health and body than HIV. I'm also a passionate triathlete, having competed at the world age group champs 3 times - since my latest m.e. relapse almost 8 months ago, I've not been able to swim, bike, run. HIV has never debilitated me to even a fraction of m.e.

In terms of how to get more awareness / funding / research for m.e., in the '80s the HIV/AIDS community response ultimately had to overcome gay stigma and AIDSphobia to get action. Quickly they found that shame was the most effective strategy to effect change. Shaming of politicians, regulators and others that hold the power of others' health in their hands saved millions of lives throughout the world. Today HIV is a chronic, manageable illness. Researchers expect a cure within 10 years.


We have growing literature of me/cfs research to back up our physical symptoms. Now is the time to leverage that power against those that impede our path to health. Shame is an approach to be included with other, softer pressures.

An approach may include a class action law suit. This would highlight the negligence ("there is nothing wrong with you") and harm (GET therapy) done to us, gains media attention, legitimatizes and validates our experiences, and threatens corporations' social positioning as good corporate citizens as well as their bottom line.

Just my thoughts, but as you can probably tell, I'm disappointed by the incompetence and ignorance of the allo medical system around me/cfs and traumatized by the harm (I do not use those terms lightly) they have done to me. It is a wrong that needs to be righted.

If only I wasn't so sick and tired, I could be more proactive - but as many of you know from your own lived experience, much of our time / energy, and money, is spent on trying to be minimally functional.

A Triathlete bites the dust - that's rough ...that's for relaying your personal story Scott. Shame is a powerful weapon. We need to get over the stigma that ME/CFS is not serious and we have more and more ammunition to show that. I think it's only a matter of time.

 

[andreamarie]

Scott, I watched my cousin die from AIDS; he really was like a brother to me. I kept his secret of being HIV positive for two years. He didn't even tell his brother. I was close to his friends and went to too many funerals.

The gay community did a brilliant job in advocacy. They had a few problems in organization, but overcame them. Remember the AIDS quilt? the red bows? the pressure on our government. Ronald Reagan never mentioned the word until Rock Hudson died.

I still find it shocking that a disease that was thought to be contagious and sexually transmitted was ignored at all.

The gay men I knew were closeted and elite. Wall Street, corporate, etc. They had money and they did give.

I'm glad to hear that you are doing well with HIV and hope the CFS will calm down.

I'm told that HIV research funding has lessened enormously. A misconception that the meds work for everyone.

 

[ScottTriGuy]

Yeah, we, in the HIV community, like to say that today AIDS doesn't kill people (in the Western world), HIV stigma does. Stigma impedes HIV testing, disclosure, medication adherence, mental health...

The stigma we in the me/cfs community experience has some differences and similarities: denial, blame, invalidation which are forms of harm and may create a trauma experience where patients may experience anger/rage, shame, hopelessness, depression, emotional numbness and longer term effects of trauma.

Inasmuch as the medical establishment now looks back with shame at their litany of previous misdiagnosis and patient-blame or parent-blame (autism, ulcers, etc), in the not too distant future they will also have to consider the harm they have/are doing to me/cfs patients.

Our challenge is to bring the future to the present.

 

[Jim]

Scott is spot on. Whether it's HIV/AIDS or the change in society's attitudes towards smoking and drunk driving, there is a lot to be learned - and copied from these other advocacy communities.

I've long felt the ME/CFS/Fibro community is too polite. I'm not suggesting we all become jerks but while statistics and such are useful, they are best used as proof-points to validate claims. Usually it takes something more "in your face" to jar people out of their daily routines. We must first overcome all the "white noise" in the market that people tune out. Once we have their attention, then we can use stats, stories and more to add substance to our message. The original civil-rights movement was non-violent but powerful because they harnessed shame and guilt and turned it into outrage.

If ME/CFS/Fibro killed people, it would be the #1 deadliest disease - ahead of heart failure and stroke. What sort of society allows millions of its people to have their lives slip away into the gray cobwebs of despair while spending a paltry $1 per person to find out why? How many families have to suffer as their loved ones retreat into corners unable to be involved in the simplest of life's pleasures? Are we as a society content with letting millions of people cease to be contributors? I don't think we are.

5 million people suffer from Alzheimer's yet it is a top of mind issue. I see a lot of similarities between these two disease groups. Time to start using the tactics others have found success with and shake folks awake. Of course this is just my opinion