ME/CFS, Research, Uncategorized

New Study: ME/CFS more Disabling than 20 Top Conditions

Hayfever receives more medical Version 2funding than ME/CFS!  Hayfever… that sniffling, sneezing, stuffy head, “achoo” condition is thought to be more serious and receives more help and respect than myalgic encephalomyelitis (ME/CFS)!  When you consider what many people think of this illness, I guess it shouldn’t be surprising.  I doubt any breast cancer patient has ever heard:

“You’re being lazy, you need to exercise”… or “You can’t be sick, you look fine”… or my favorite: “Oh I think I have that too! I get tired after doing 100 errands all day long”.

The message we receive from Doctors, Nurses, Research Organizations, some family & friends & the media is:  ME/CFS just isn’t that bad of an illness.  And if you do happen to be bedridden and look sick and have serious medical complications, well, then you can’t possibly have ME.  That’s what I was told by more Doctors than I could ever count.  I either “wasn’t sick & just being lazy” or I was “too sick to possibly have that fatigue illness”.

A new study, conducted by the Danish, was just released that measured the degree of disability in MECFS patients (ie: how severe is the illness and where do we fall on the scale compared to other conditions).  The results will probably be shocking to everyone except ME patients…

In a list of 21 medical conditions, including: breast cancer, colon cancer, heart disease, renal failure, stroke brain, lung cancer, rheumatoid arthritis, sclerosis, depression, angina, among 10 others…
ME/CFS is listed first in severity of disability.   FIRST.

We have the lowest quality of life.  This comes as no surprise to me or probably any of us battling this illness.  I have friends & family that have battled many of the conditions compared to ME in this report and none of them were as debilitated as my case of ME/CFS.  Not even close.
A quote previously released by the Canadian ME/CFS Consensus reads:

“ME/CFS is actually more debilitating than most other medical problems in the world, including patients undergoing chemotherapy and HIV patients (until about 2 weeks before death).”   Canadian ME/CFS Consensus

That quote was stunning when it was released, but it was still just a quote.  This is the first study I know of that specifically compares the quality of life of ME/CFS to so many of the top illnesses out there.

Who was in the study?

All members of the Danish ME/CFS Patient Association (319 people) were asked to fill out questionnaires.
The questionnaire included something called the EQ-5D-3L (it’s a self reported, quality of life assessment).  From the 319 people, 105 ME patients were identified and gave responses that were valid to participate.

How did they come to this conclusion?

Often, you hear people say that self assessment reports don’t hold as much weight as say, a blood test that shows your “xyz is positive”.  I have always found that to be ironic as they are a much better gauge of people’s condition and severity.  After all, you can test negative for a condition and still have it.  Testing positive for Breast cancer for example, doesn’t show you how severe the disability of that patient will be. 
Patients know their bodies better than any potentially inaccurate blood test and are able to self report, even the smallest detail, to incredible accuracy.

Here are some of the questions patients were asked on the EQ-5D-3L (you checked what applied to you):

Screen Shot 2015-07-08 at 11.39.41 PM

What illnesses weren’t we compared to?

The only thing that struck me as being noticeably missing on the list were illnesses like Lupus and Lyme Disease.  But since the Danish didn’t have a quality of life score for Myalgic Encephalomyelitis, it’s not a big leap to assume they probably don’t have one yet for Lyme either.

A truly new understanding:

Whether you are severely ill or fairly functional, we share the same battle:  getting people to believe we have ME/CFS .  After all, no one could be completely bedridden, on oxygen and a morphine drip 24hrs a day and have MECFS… right?
This study might be small but it feels like a big step forward to me, to finally be able to say “wrong!” when that question gets asked and have a quantified severity of MECFS to back it up!

8 thoughts on “New Study: ME/CFS more Disabling than 20 Top Conditions”

  1. My friend wrote and said she was going to print out the graph to show her Doctor. Her Doctor believes in ME but doesn’t exactly understand why she’s “so sick”. She was hoping this could shed some light on that. I thought that was a great idea and wanted to post her suggestion here. Thanks Emily!


    1. Jane: you make a great point I hadn’t thought of about how even as we start to gain small (well, really more like teeny tiny) amounts of understanding into how severe this illness can be, there will always be those people that think “that” still doesn’t apply to “us”.

      It fascinates me people think you can “view” severity. No one looks at someone with Cancer and says: “oh they aren’t severely ill because they came out to lunch with me today…so – they can’t possibly have stage 3 breast cancer”.


  2. I know this is true as I am carer for my daughter who has had ME for 27 years.I had lung cancer eighteen months ago, had an operation to remove two different tumours from my lung and at no time was I even remotely as ill as my daughter. I am aged seventy, have Osteoporosis, Osteoarthritis and Menieres and I get out and about, but my daughter is lucky she manages out every two months and uses a small electric scooter or an attendant propelled manual wheelchair.I get so angry when people say stupid things like “there’s a lot of people much worse off”. Thank you for sharing this article.xx

    Liked by 1 person

    1. Estelle: My mom cared for me while I was bedridden from the age of 11, non stop, for the next 20yrs. I don’t know how ill your daughter is cognitively but let me say to you what I wish I had been more able to say to my mom when I was at my sickest; Thank You. I was so sick, so coma-like at my worst, I rarely talked at all, let alone said what I should have to my mom. I am only alive today, I am only able to have the life I do today, because of the love and care from my Mom. As horrific as your daughter’s situation / illness is, she is so lucky to have a mom like you that has battled horrible health situations herself and still has such deep understanding of what her daughter goes through.


      1. Thank you for the nice comments Ginger Ail. Sorry to hear you’ve been so ill. My daughter has had M.E. since the age of 9 and she is now 36.She was bed ridden for 4 years when she was 13. she was still being bullied to attend school and with no support from doctors it was a very difficult and frightening time.We did eventually find a good GP but unfortunately he retired about 16 years ago and we’re now left with the best of a bad bunch. Fiona is no longer bed bound most of the time but is virtually house bound and is only able to get out in her wheelchair or wee scooter now and again, but always suffers terribly afterwards. She often feels she is a burden (My ex best friend told her this) but she is never that. I only wish family and some friends would realise how ill she really is and how much she has missed out on.
        I am so glad you had your mum to love and care for you . Take Care x


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