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Is CFS really worse than Cancer?

Messages
55
Hi i originally joined this forum believing i wa suffering the early stages of maybe cfs as i was struggling with crazy energy swings & digestive issues which ended up i guess being anxiety as the energy swinge went away after i got blood work done to find out everything was Healthy

Now what gave me much Anxiety is i heard that CFS patients have the poorest quality compared to diseases like MS, Diabetes, Crohns, UC, HIV/AIDS, Lupus, Celiac & Cancer.... Yes Cancer
Link https://www.healthrising.org/blog/2...gue-syndrome-worse-mulitple-sclerosis-cancer/

Now i dont mean Any disrespect what so ever but my question is Why is this disease so bad? My biggest fear that had scared me was being bedridden for a couple of days after exercise as i am a bodybuilder
How come people cant exercise? I know some people who Have HIV, Are diabetic & i even have a buddy of mine going through chemo right now for skin cancer & he is able to workout in the gym!! What causes CFS patients to be bedridden? How come the quality of life is affected so badly?
 

HowToEscape?

Senior Member
Messages
626
In terms of polity of life, yes. I have known people who have had cancer and all of them could run rings around me. I was formally quite physically fit and worked out six times a week. There is one difference though those people died after a few years of having cancer whereas we just slowly fade into the dirt.

It does seem that average life expectancy for us is about 15 to 20 years less with this disease; it’s not a rapid end as with some forms of cancer. A fair number of cancer cases now are cured, that is five years later the original cancer is gone. I believe that’s considered cured.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
How come the quality of life is affected so badly?

Take a look at the common symptom lists for CFS/ME and you'll get a bare overview of symptoms that can degrade quality of life:
Canadian Consensus Criteria - List of common ME symptoms agreed upon by ME specialists

International Consensus Criteria - Another list of common ME symptoms agreed upon by ME specialists

But those are just lists of symptoms. This illness can be like a living hell at times for people who are close to, or in the severe end of the spectrum. I've had times where the exertion from chewing caused muscle burn; times where I couldn't even stand because my blood vessels wouldn't regulate my blood pressure properly; times where watching snowflakes fall forced me to close my eyes because my brain couldn't handle so much visual stimulation. I've been so tired for days at a time that my muscles burned with pain. These are all things that don't happen with healthy but tired people.

At my worst I lay in bed with my eyes closed and covered because light was so overstimulating, using ear plugs because sound was so overstimulating and even painful, so tired I could barely move and only think a few thoughts. And yet, I couldn't sleep normally and didn't feel any sense of refreshment or extra energy when waking.

The fatigue of CFS/ME is so much more than tiredness that regular people experience. It's a fatigue that goes right down to the cells. Even a healthy person who runs a couple of back-to-back marathons wouldn't understand this type of fatigue because though their body is exhausted, it still produces energy properly.

I'd like to write more but my brainfog is getting worse and making it difficult to think and type.
 
Messages
55
Take a look at the common symptom lists for CFS/ME and you'll get a bare overview of symptoms that can degrade quality of life:
Canadian Consensus Criteria - List of common ME symptoms agreed upon by ME specialists

International Consensus Criteria - Another list of common ME symptoms agreed upon by ME specialists

But those are just lists of symptoms. This illness can be like a living hell at times for people who are close to, or in the severe end of the spectrum. I've had times where the exertion from chewing caused muscle burn; times where I couldn't even stand because my blood vessels wouldn't regulate my blood pressure properly; times where watching snowflakes fall forced me to close my eyes because my brain couldn't handle so much visual stimulation. I've been so tired for days at a time that my muscles burned with pain. These are all things that don't happen with healthy but tired people.

At my worst I lay in bed with my eyes closed and covered because light was so overstimulating, using ear plugs because sound was so overstimulating and even painful, so tired I could barely move and only think a few thoughts. And yet, I couldn't sleep normally and didn't feel any sense of refreshment or extra energy when waking.

The fatigue of CFS/ME is so much more than tiredness that regular people experience. It's a fatigue that goes right down to the cells. Even a healthy person who runs a couple of back-to-back marathons wouldn't understand this type of fatigue because though their body is exhausted, it still produces energy properly.

I'd like to write more but my brainfog is getting worse and making it difficult to think and type.
Damn im sorry to hear that, sounds awful my prayers go out to you

What causes CFS? What causes yours if you dont mind me asking
 

notmyself

Senior Member
Messages
364
Don't feed your anxiety..energy swings and digestive issues don t mean ME/CFS..relax read something healthy, not about how CFS is worse than cancer ( wich is not by any means )..
 

Pen2

Support, Good Medicine.
Messages
391
Location
Maryland, US
Hi @Worried1230 ,
They really don't know what causes ME/CFS like
@PatJ said. One theory is it's caused by a previous infection one had.

Like, Limes disease or I had a fungal infection in my lungs, it could be any infection. Even though you may not know you have one.

I'm sorry, reading about it will help you better than I can at this moment. I just wanted to at least say something since @PatJ did such a long great job describing ME.

Hope you find and get more answers.
Many of us check back and give more responses.
All the best,
Pen2
 

Gingergrrl

Senior Member
Messages
16,171
I have not read this thread (only the title b/c I am literally getting ready to go back to hospital to be with my mom who has terminal cancer). I think comparing the two are like comparing apples and oranges and the comparison IMO is not helpful. Prior to this experience, I might have given a different answer but after the last month, I have never seen anyone suffer as much as my mom (and other terminal cancer patients, not just her) and IMO cancer is worse. This is just my opinion and not meant to cause any arguments.

Edit: I think I am replying b/c I hate these comparisons of suffering more than anything. It's as if someone wrote, "What is worse, if your son was murdered or your daughter was murdered"? Both are equally bad. People with severe chronic illnesses suffer. Why do they need to be compared? It is just not helpful IMO.
 

Tally

Senior Member
Messages
367
I think I am replying b/c I hate these comparisons of suffering more than anything.

These comparisons are not competitions of who has it worse but very important practical considerations. It is indeed a complex and unpleasant exercise to measure and compare human suffering, but we can't turn our heads away from something so important even if it makes our stomachs churn. It is an attempt to objectively quantify quality of life that people have so very important decisions can be made: which illness should get more funding? between two equally effective treatments which lowers quality of life less? etc.

Since you don't have time to read the thread I will just quickly tell you that in the first link terminal cancer was not compared, but only cancer as a chronic illness. No one in their right mind would say that having mild or moderate CFS where you can still go out is worse than terminal cancer. So I completely understand where you're coming from, and your state of mind right now. I'm really really sorry you have to watch someone you love go through that. You have my deepest sympathy.
 

Gingergrrl

Senior Member
Messages
16,171
Thank you @Tally for your kind words and sympathy re: my mom. I am at hospital now w/her and just got to read this entire thread.

I think we will have to agree to disagree re: comparing human suffering between different illnesses and for me it is not helpful or useful (but if it is for others, I do not want to interfere in the conversation).
 
Messages
55
Thank you @Tally for your kind words and sympathy re: my mom. I am at hospital now w/her and just got to read this entire thread.

I think we will have to agree to disagree re: comparing human suffering between different illnesses and for me it is not helpful or useful (but if it is for others, I do not want to interfere in the conversation).
I am not in no way trying to compare illness all i asked is why the quality of life is worse than cancer, how this illness can be avoided is what i really wanna know, from the sounds of it i cannot imagine not being able to exercise or basically living my life, i found out 2 weeks i have mild crohns disease but other than abdominal pain & gut issues, it doesnt affect my quality of life, if i was forced to live a sedentary lifestyle i would go crazy
 

notmyself

Senior Member
Messages
364
I am not in no way trying to compare illness all i asked is why the quality of life is worse than cancer, how this illness can be avoided is what i really wanna know, from the sounds of it i cannot imagine not being able to exercise or basically living my life, i found out 2 weeks i have mild crohns disease but other than abdominal pain & gut issues, it doesnt affect my quality of life, if i was forced to live a sedentary lifestyle i would go crazy
can i ask you what are you really doing on this forum?? from what you say you don t have Me/CFS, not even close actaully..go and live life..why are you worried of a disease that you don t have?...
 
Messages
55
can i ask you what are you really doing on this forum?? from what you say you don t have Me/CFS, not even close actaully..go and live life..why are you worried of a disease that you don t have?...
I originally joined because before i got my
Diagnosis of crohns i looked online at the symptoms i was suffering fatigue, digestive issues, brainfog etc & it said cfs was one of the possibilities
 

notmyself

Senior Member
Messages
364
I originally joined because before i got my
Diagnosis of crohns i looked online at the symptoms i was suffering fatigue, digestive issues, brainfog etc & it said cfs was one of the possibilities
if you are still able to train like before you can rule out CFS..
 
Messages
102
Hi i originally joined this forum believing i wa suffering the early stages of maybe cfs as i was struggling with crazy energy swings & digestive issues which ended up i guess being anxiety as the energy swinge went away after i got blood work done to find out everything was Healthy

Now what gave me much Anxiety is i heard that CFS patients have the poorest quality compared to diseases like MS, Diabetes, Crohns, UC, HIV/AIDS, Lupus, Celiac & Cancer.... Yes Cancer
Link https://www.healthrising.org/blog/2...gue-syndrome-worse-mulitple-sclerosis-cancer/

Now i dont mean Any disrespect what so ever but my question is Why is this disease so bad? My biggest fear that had scared me was being bedridden for a couple of days after exercise as i am a bodybuilder
How come people cant exercise? I know some people who Have HIV, Are diabetic & i even have a buddy of mine going through chemo right now for skin cancer & he is able to workout in the gym!! What causes CFS patients to be bedridden? How come the quality of life is affected so badly?

Because most parts of their body systems are metabolically doing little more than idling for survival.
 

maybe some day

Senior Member
Messages
775
Location
West coast
Cancer patients want to be cured. Some cfs patients would rather have cancer. At least theres potential treatment, and a known outcome.

I have a friend who is in chemo once a week, and functions just about normal. However, is condition is terminal. Yet he had a normal active lifestyle.

Op, theres lots to read about cfs/me. Spend some time here, and it will give you a good picture.

CFS is likely the most chronic debilitating illness out there.

I read where a father was talking about his daughter regarding CFS / ME. " if you're going to get sick, for God's sake get something mainstream"
 

unicorn7

Senior Member
Messages
180
Now what gave me much Anxiety is i heard that CFS patients have the poorest quality compared to diseases like MS, Diabetes, Crohns, UC, HIV/AIDS, Lupus, Celiac & Cancer.... Yes Cancer
Link https://www.healthrising.org/blog/2...gue-syndrome-worse-mulitple-sclerosis-cancer/

Now i dont mean Any disrespect what so ever but my question is Why is this disease so bad? My biggest fear that had scared me was being bedridden for a couple of days after exercise as i am a bodybuilder
How come people cant exercise? I know some people who Have HIV, Are diabetic & i even have a buddy of mine going through chemo right now for skin cancer & he is able to workout in the gym!! What causes CFS patients to be bedridden? How come the quality of life is affected so badly?

It all depends on the severity. I wouldn't say it's worse than cancer, because you can die from cancer.

It's actually the opposite from cancer. The problem with cancer is that usually you don't have that many physical problems, so you don't notice that you have it until it's too late and you have metastasis.
ME is feeling really bad all the time, but you (almost) never die from it.

ME is liking having the flu. It's not that bad if it would be just a week, like with the flu, but after 30 years of being exactly as ill as when you have the flu, you would probably rather have anything else. Plus there's no cure yet, it's very misunderstood and you can get no help for it whatsoever.