• Phoenix Rising needs funds to operate: please consider donating to support PR

How many people have been ill with CFS/ME for over 20 years?

alex3619

Senior Member
Messages
13,802
Likes
37,637
Location
Logan, Queensland, Australia
There is some evidence, far from conclusive, mostly from Hornig's work, that a switch gets flipped at about three years of illness. Up till then we have one thing wrong, but those who are still sick after three years have something slightly different wrong. Recovery at that point is much less common.
 

jann1033

Senior Member
Messages
175
Likes
162
There is some evidence, far from conclusive, mostly from Hornig's work, that a switch gets flipped at about three years of illness. Up till then we have one thing wrong, but those who are still sick after three years have something slightly different wrong. Recovery at that point is much less common.
I know mine drastically changed at 10 years. After 5 i had appeared to be recovering, still sick but had periods where i was maybe 40-50 percent of pre CFS, then 10 years horrible crash, progressively worse since. My best days,now are probably close to what were my worst days in years6-9.
 
Messages
2
Likes
5
Location
North of England
The bit of research that is missing is what percentage of the 1m sufferers in the US and 250k sufferers in the UK - have suffered for over 20 years. We need demographic patient databases both sides of the atlantic. Unfortunately as we know they cost millions of £/$ to build and maintain. This would help with recent threads regarding co-morbidity too. I personally know people who have suffered for over 35 years, now suffering life threatening co-morbidity. This generation will shortly begin to die, and not one will have ME as a cause mentioned on their death certificate, and they will never have been recorded in any serious epidemiological studies.

As for me, 24 years. Glandular Fever (Mono) in 1990, virtually fully recovered by 1993 only to catch Hong Kong flu in the 93/94 global epedemic (sometimes dubbed pig & duck flu) from which I never recovered.
 

Scarecrow

Revolting Peasant
Messages
1,904
Likes
5,334
Location
Scotland
There is some evidence, far from conclusive, mostly from Hornig's work, that a switch gets flipped at about three years of illness. Up till then we have one thing wrong, but those who are still sick after three years have something slightly different wrong. Recovery at that point is much less common.
I've wondered about this. Three years from what point? Like you, alex, I'm someone with a staged onset. The slippery slope lasted six years getting ever worse. Then I fell off a cliff so to speak. Three years from then? Curiously enough it was three years from then that I decided I was well enough to get back to university but it was a false recovery. I've been able to work more or less constantly ever since but I'm certainly not recovered in any true sense. And if I hadn't pushed my limits - again - I probably wouldn't have relapsed four years ago, although the final straw was outwith my control. Yet I seem fortunate to be able to regain a lot of lost ground , certainly more readily than most.
 

jann1033

Senior Member
Messages
175
Likes
162
I have wondered as one ages and the longer they have cfs/me, it becomes harder to work out what is caused by aging and what is caused by cfs/me. Then again cfs/me also seems to speed up the aging process through things like hormone dysfunctions, increased oxidative stress, im sure the list goes on....


Imo that never happens. None of my friends, many whom i have known longer than i have had CFS, are any place close to me . natural aging in no way can be confused for CFS. My parents are 87 and 90. This past year they are beginning to come close to my normal fatigue from doing nothing after they have gone shopping or something.

No offense intended but when i read posts like yours i wonder how in the world can we have the same illness for someone to even question that. Our experience must be polar opposites
 

jann1033

Senior Member
Messages
175
Likes
162
We have high levels of metabolic syndrome, and nearly double the risk of lymphoma. For many of us that metabolic syndrome will progress to type 2 diabetes. Even if ME itself could not kill, this would increase our death rate in long term sufferers, though not hugely.
Could you show a reference to the type 2 connection? Iwas just discussing this but have never seen studies. I have type2 that was well controlled(a1c around 5) but since this flare started last march its gone up to 7, cholesterol is way higher, etc. I would like to show that to my pcp.
 

heapsreal

iherb 10% discount code OPA989,
Messages
9,262
Likes
8,847
Location
australia (brisbane)
Imo that never happens. None of my friends, many whom i have known longer than i have had CFS, are any place close to me . natural aging in no way can be confused for CFS. My parents are 87 and 90. This past year they are beginning to come close to my normal fatigue from doing nothing after they have gone shopping or something.

No offense intended but when i read posts like yours i wonder how in the world can we have the same illness for someone to even question that. Our experience must be polar opposites

Your parents would be rare as most 80yr Olds would have poor health if they managed to stay alive.

I'm not confusing aging with cfs but comparing ones function. At some stage in the aging process fatigue and function could line up with those of cfs, although from a different cause.

Most elderly have sleep problems, need to have regular naps and rest periods, in chronic pain and many have issues with controlling postural blood pressure as many become dizzy on standing suddenly etc and is a cause of many falls in the elderly. If elderly don't have any of those issues then they are rare and lucky?

it's a natural process of aging that the body breaks down, cfs probably speeds this process up in some areas.
 

jann1033

Senior Member
Messages
175
Likes
162
I'm 61, the problems I have from aging, eg advanced arthritis in both knees, have not "caught up" with my CFS, if anything they have compounded it. I have aging plus CFS, two totally different animals. "Normal" aging doesn't prostrate people like CFS does, I'm talking about reasonably healthy people, not someone with cancer or something. My husband also has arthritis, but he can still function, work ect. He may be less capable of some tasks than 20 years ago but he can still function, if he takes a nap he can get up refreshed and carry on.

My parents are actually pretty normal for their age, I know others who are actually much healthier than they are which is my point. Since i was in my mid thirties( when I got CFS) I have had less energy than my mother does now at 87. How could that ever catch up.
 
Last edited:

heapsreal

iherb 10% discount code OPA989,
Messages
9,262
Likes
8,847
Location
australia (brisbane)
I'm 61, the problems I have from aging, eg advanced arthritis in both knees, have not "caught up" with my CFS, if anything they have compounded it. I have aging plus CFS, two totally different animals. "Normal" aging doesn't prostrate people like CFS does, I'm talking about reasonably healthy people, not someone with cancer or something. My husband also has arthritis, but he can still function, work ect. He may be less capable of some tasks than 20 years ago but he can still function, if he takes a nap he can get up refreshed and carry on.

My parents are actually pretty normal for their age, I know others who are actually much healthier than they are which is my point. Since i was in my mid thirties( when I got CFS) I have had less energy than my mother does now at 87. How could that ever catch up.
Sounds like good genetics that they didnt pass on to you;)

I think cfs ages us prematurely. I wonder if all the inflammation and oxidization that we get from cfs worsens things like arthritis etc and probably increases our risk factors for heart disease and diabetes etc Just being sedentary from cfs would increase these risk factors.
 

alex3619

Senior Member
Messages
13,802
Likes
37,637
Location
Logan, Queensland, Australia
Could you show a reference to the type 2 connection? Iwas just discussing this but have never seen studies. I have type2 that was well controlled(a1c around 5) but since this flare started last march its gone up to 7, cholesterol is way higher, etc. I would like to show that to my pcp.
This has come up a few times, but the CDC multicenter study is finding a lot of metabolic syndrome. That is a primary risk factor for diabetes type 2. This has anecdotally been noted since the 90s however, and I think it might have been noted in a study or two.

Here is the exact figure: 10.1%, off the recent Klimas presentation.
 
Last edited:

dannybex

Senior Member
Messages
3,426
Likes
2,469
Location
Seattle
There is some evidence, far from conclusive, mostly from Hornig's work, that a switch gets flipped at about three years of illness. Up till then we have one thing wrong, but those who are still sick after three years have something slightly different wrong. Recovery at that point is much less common.
But possible, he says defensively. :)

In my local ME/CFS group, we've had about a half dozen people recover, and two of them were sick for 16 and 17 years. And the latter was 59 when she recovered.

Of the six, one had been well for 13 years, but relapsed in 2012, but recovered within 9 months and was back at work and still is. And he's 62 years old.
 

alex3619

Senior Member
Messages
13,802
Likes
37,637
Location
Logan, Queensland, Australia
I first heard of sudden recovery in about 1989. An ME patient recovered suddenly after 25 years. Some kind of recovery is possible, and if short term remission is indicative then many of us could recover if we could just figure it out ... or be very very lucky.
 

Gingergrrl

Senior Member
Messages
15,193
Likes
45,129
It just seems that since we do not know definitively what switches the illness on, we also do not know definitively what switches it off or into remission. Until we do, I think anything is within the realm of possibility even though unlikely. I am trying to stay hopeful yet realistic.
 

taniaaust1

Senior Member
Messages
13,054
Likes
15,548
Location
Sth Australia
Your parents would be rare as most 80yr Olds would have poor health if they managed to stay alive.

I'm not confusing aging with cfs but comparing ones function. At some stage in the aging process fatigue and function could line up with those of cfs, although from a different cause.

Most elderly have sleep problems, need to have regular naps and rest periods, in chronic pain and many have issues with controlling postural blood pressure as many become dizzy on standing suddenly etc and is a cause of many falls in the elderly. If elderly don't have any of those issues then they are rare and lucky?

it's a natural process of aging that the body breaks down, cfs probably speeds this process up in some areas.
Hi heapsreal :)

I agree with the other, CFS isnt comparable with old age issues. I usually date elderly people (two so far in their 80s, I think? my current one is in his 80s too) in the hopes I can keep up with them.

Thing is I cant, their old age issues are quite minor "disabling" compared to the ME/CFS ones I have and what is even worst one of them was not only elderly, he had severe diabetes, heart failure (he was given less then a year to live when we got back together) and he was a XXXXX large in size (so very very very obese, he had to wear like an indian smocks as clothes in stores didnt fit him).

His capabilities was far more then my own!! (its scary when someone that old and that obese and dying of heart failure can be 10 times more active and compared to me is well! (he did have sores on his legs from his diabetes and he did have IBS.. and he did puff when he walked but other then that he was fine, I think that was when I finally realised just how really ill I am when I started to compare myself with him and what he could and couldnt do. This guy was looking after me.

When I stayed with him for 6 weeks, he used to actually leave me at his house while he went out as he deemed me too unwell to go out with him.

I can also usually tell when I have a different issue caused by something not CFS related. Im fairly sure I'd know my old age symptoms from my ME ones.

My current in his 80s I think (darn memory issues) elderly friend/boyfriend, his memory is still better then my own (thou is slowly declining), he has no trouble getting around at all as far as driving goes (other then he is tired after a long drive or driving to my place).. his only slightly disabilling thing right now other then fatigue and dizziness at times (with the dizziness I think his doctor has him on too strong BP lowering drugs for him as that is when that started). He's now getting rheumatoid arthritis in his hands so starting to find he gets some hand pain when doing some things eg pushing my wheelchair

Actually his symptoms are starting to go CFS like in the past year but Im suspecting he's caught something from me!. (He's getting symptoms which isnt old age eg issues with his throat, his doctor thought he had staph but he's tested negative so his doctor is still trying to figure out what is wrong, he's also getting headaches and that isnt really an old age thing).

My ownly surviving grandparent, thou she also have rheumatoid arthritis, IBS, FM, insomnia and gets migraines at times, she is more able then me (thou her memory is maybe worst or around the same level as mine..so we have great understanding for each others memory issues and joke about our memories and the stupid things we have done due to them on the phone). She wont even go out shopping with me as I once collapsed on her.

She was wanting me to go all over a store with her but I was physcially incapable of doing as she does. I cant remember how old my granny is but Im in my 40s. I would not compare ME/CFS symptoms to typical old age ones. That's like comparing just fatigue with complete exhaustion.
 
Last edited:

taniaaust1

Senior Member
Messages
13,054
Likes
15,548
Location
Sth Australia
This has come up a few times, but the CDC multicenter study is finding a lot of metabolic syndrome. That is a primary risk factor for diabetes type 2. This has anecdotally been noted since the 90s however, and I think it might have been noted in a study or two.

Here is the exact figure: 10.1%, off the recent Klimas presentation.
Isnt metabolic syndrome common in the normal population too thou? I know its the norm in PCOS and PCOS isnt uncommon. Im not convinced unless I knew how many non ME/CFS people get it.
 

alex3619

Senior Member
Messages
13,802
Likes
37,637
Location
Logan, Queensland, Australia
Isnt metabolic syndrome common in the normal population too thou? I know its the norm in PCOS and PCOS isnt uncommon. Im not convinced unless I knew how many non ME/CFS people get it.
This is hard to compare. On face value, its present in up to 20% of the population, or even 22.9% here, so we come in at half. Yet takes into account older people in whom it is more common. However, based on this score we might have less risk. Hmmmm ... my first reading of this is that ME is protective. It would really depend on age distribution though.

The cancer risk being found in the latest CDC multisite is about double the regular population though - I think this was cited at the P2P by Vernon.

That was a good question @taniaaust1
 

NK17

Senior Member
Messages
592
Likes
1,512
EBV and a horrendous case of Infectious Mono started it for me, back in 1981.
I'm trying to look ahead and consider myself a veteran of this warlike illness.
 

Sing

Senior Member
Messages
1,776
Likes
1,686
Location
New England
About metabolic syndrome, I would bet, if this were found to happen more frequently, it is connected to the endocrine difficulties we have. Sympathetic nervous system and endocrine system.

When at the time of worst descent, early on, I lost my ability to tolerate sugar, sweets. Before that, they temporarily tasted good and gave me a pleasant lift. But once I descended into ME, I immediately felt as if I were being poisoned and had what felt like a physical anxiety attack. So I learned to eat the lower glycemic carbs with fats and proteins instead of the straight stuff (sugar). But at the same period my appetite had gone down. I believe that was protective--high leptin (?) with a descent into more illness. Since then, my body can't tolerate being overweight any more than it can tolerate alcohol. The irony is that I am not healthy enough either to drink, eat really badly or be overweight. People who can do this always seem more high functioning than I.

It takes a well functioning endocrine and sympathetic nervous system to deal with sugar. Once ours falls apart, we will really fumble the ball.