POLL: In the first 6 to 8 years of your ME/CFS, did you get slowly worse, better or remain stable?

[Hip]

This poll is for ME/CFS patients who have had their illness for 6 to 8 years or longer.

The poll asks whether over the first 6 to 8 years of your illness, you slowly got worse, slowly got better, or remained reasonably stable in that period?

Please exclude the first 2 years of your ME/CFS, because this is often the initial period where many patients get increasingly worse, as they descend into the illness.

But after the initial 2 years, did you find your ME/CFS slowly got worse over the subsequent 4 to 6 years, slowly improved over those 4 to 6 years, or remained fairly stable in that time? Please answer the poll accordingly.

By getting worse or improving, we mean approximately around a 1-level change (or more) on the ME/CFS scale of Very Severe – Severe – Moderate – Mild – Remission. For example, if in those 4 to 6 years you moved from moderate to mild, or from moderate to severe, those are both 1-level changes.


This poll also asks whether or not your ME/CFS appeared just after mononucleosis (glandular fever). If it did, please vote accordingly; and if your ME/CFS did not start after mononucleosis, again please vote accordingly.


The reason for this poll is as follows: a study found that 45% of post-mononucleosis ME/CFS patients returned to work after a 7 year period, so it seems like there are good recovery rates in the post-mononucleosis ME/CFS subset. Mononucleosis is caused by Epstein-Barr virus in around 90% of cases, and by cytomegalovirus in around 10% of cases.

Whereas another study that looked at improvement in ME/CFS in general over a 5 year period found that substantial improvement occurred in less that 6%. So that suggests that in the general case, natural improvement in ME/CFS is infrequent, whereas natural improvement is common in post-mononucleosis ME/CFS.

Thus this poll aims to see whether post-mononucleosis ME/CFS patients do indeed have a tendency towards natural improvement over time, in the first 6 to 8 years of their ME/CFS illness.

 

[Sushi]

This poll also asks whether or not your ME/CFS appeared just after mononucleosis (glandular fever).

Is there a way that you could fit "mononucleosis" into your title? Otherwise non-mono onset patients like myself are going to be confused for a bit until we figure out that the poll is just for mono onset.

 

[Diwi9]

@Hip - I can't answer this poll. I initially got sick in 2009 and was in the mild category for 2 years, sometime into the 3rd year I was able to resume activity (not to the same level, but had stamina). For 5 years I passed as normal with modifications to my lifestyle and a few bad days when I overdid it (I consider this period a quasi-remission). Then, in the 7th year, I relapsed (this is when I was officially diagnosed) and was bedbound for about 6 months...I'm entering my 9th year and have about 3 hours of quality energy a day...my symptoms are reduced overall with medical treatment. It's hard to gauge where I am...as my status fluctuates. Overall it is more stable and more predictable, still difficult as hell to manage though.

 

[Hip]

Is there a way that you could fit "mononucleosis" into your title? Otherwise non-mono onset patients like myself are going to be confused for a bit until we figure out that the poll is just for mono onset.

The poll is actually for all ME/CFS patients who have had this illness for at least 6 years.

If your ME/CFS started with mononucleosis (glandular fever), then you vote accordingly; and if it was not a mono onset, then you select the non-mono voting options.

 

[Hip]

For 5 years I passed as normal with modifications to my lifestyle and a few bad days when I overdid it (I consider this period a quasi-remission). Then, in the 7th year, I relapsed (this is when I was officially diagnosed) and was bedbound for about 6 months...I'm entering my 9th year and have about 3 hours of quality energy a day

There are going to be some patients who have a more complex course of illness like yours, who may not be able to vote in this poll. Although in your case, you could perhaps take you ME/CFS onset from your relapse (although you have not yet had ME/CFS for 6 years since the relapse, so you still would not be able to vote).

 

[Thinktank]

Not sure if i can vote.
I was "stable" for years, sick but not getting worse until i got hit with IBD but instead of treating that i pursued a differential diagnosis.
Then i got misdiagnosed with lyme disease, the longterm abx treatment made me extremely sick at times. Now that i have stopped treatment a year ago i start to feel better on some points, worse on others.

Maybe i would have been "stable" all this time without the unnecessary and harming abx treatment.

 

[Hip]

Yes, patients that have a more complex history like yours, @Thinktank, won't really be able to vote.

 

[ahmo]

@Hip My level of energy remained, and remains, relatively stable. My condition did, in some ways, worsen toward the end of 8 years, w/ increased anxiety and CNS symptoms. But those issues were eventually frelieved by changes in diet and then B12, etc. So I've polled as stable, w/o mono. cheers.

 

[Sushi]

In the first 6 to 8 years I was anything but stable--up and down. That has really been the pattern for decades. I don't think that I had mononeucleosis but I can't be sure. I did suddenly go from relatively mild to moderate 12 years ago, but that was in response to overdoing not a specific illness event.

 

[Diwi9]

I did not have POTS at the start of this ME/CFS journey, now I have POTS and it has gotten worse. POTS is starting to show evidence of being autoimmune. When people get worse, I wonder if it is because they are developing autoimmunity in conjunction with their ME (although ME may in fact turn out to be autoimmune). My doctor stated that people with autoimmunity rarely have one autoimmune disease.

 

[Sushi]

I did not have POTS at the start of this ME/CFS journey, now I have POTS and it has gotten worse. POTS is starting to show evidence of being autoimmune. When people get worse, I wonder if it is because they are developing autoimmunity in conjunction with their ME (although ME may in fact turn out to be autoimmune).

Interesting question! I didn't have POTS either in the early years though I did have NMH.

 

[Hip]

The results of the poll so far:

There were 6 people with post-mono ME/CFS, and 5 of these (83%) said they got worse, and none (0%) said they got better.

There were 38 people with ME/CFS not connected to mono, and 22 of these (58%) said they got worse, and 6 of these (16%) said they got better.

So there seems to be no evidence from this poll that post-mono ME/CFS have a tendency to get better over time; in fact the quite the reverse: it is the patients with ME/CFS not connected to mono that are more likely to get better over time.

So the results of this poll do not appear to support the study which found that post-mono ME/CFS patients have a tendency to get better.


One possible explanation for this discrepancy is that the study examined post-mono ME/CFS patients who already had their illness for an average of nearly 5 years, and then the study observed how they fared over the next 7 years (in terms of getting better or worse).

Whereas this poll asks how patients fared from the point in time onwards when they had their illness for only 2 years (rather than 5 years).

 

[meandthecat]

I plumped for the mono group improving as for me it began with the worst 'virus' I had ever known, god knows what it was.
I got worse for 3yrs, plateaued for about 3yrs and began to improve to date where I am ok, about 12yrs on.
I don't think that ME is something you ever fully recover from, a bit like life.

 

[Hip]

I plumped for the mono group improving as for me it began with the worst 'virus' I had ever known, god knows what it was.

Glandular fever (mononucleosis) is not just any viral infection, but one which involves swollen lymph nodes in the neck, fever, sore throat, sweating, muscle aches and other symptoms.

Glandular fever lasts for several weeks, and even in people who don't get ME/CFS afterwards, it leads to fatigue which can persist for several months.

You are allowed to change your vote in this poll if you like.

 

[unto]

Hello, it's true in the early years it was an alternation of periods of improvement (in summer)
in which I thought I could heal ...... and periods when I got worse (in autumn-winter),
in the cold season I even feared dying and lived in anguish and helplessness, often at home to treat me from colds-influences, sore throats and headaches; then slowly I learned to live with the disease,

I learned to avoid the virosis, headaches and bad throat using the hat and scarf, I learned to eat lighter to reduce digestive problems and cuddle my joints with light gymnastics and walking ....; in short words
I resigned myself - contented to live like this.
492/5000

The onset of my illness was flu-like, with low-grade fever 37.2, slight sore throat and sweating, but I doubt it was EBV because I think this world pandemic started in 1934 in Los Angeles (?) And in continued expansion can not be explained with this virus (I am convinced that in the industrialized countries the percentage of the incidence of ME is between 1% and 5%, so in countries like UK, Italy, Germany the patients could be about 1 million).

1) Because in the numerous attempts made by scientists to attribute the responsibility of the ME has never been demonstrated ...

2) ME does not behave like Mononucleosis, Me is always cyclical and permanent.

3) Although this will disturb many - the contagiousness of ME is permanent, even after 30 years as in my case

I go back to the poll, I feel I'm getting worse slowly, while maintaining levels of strength-energy and good mental activity; after 30 years of ME I can say that I am well, but this is only the result of knowing how to live with the disease; it unfortunately goes ahead, it involves tissues, organs (heart, kidneys, lungs ..), blood vessels, nerves ..... but all sweetly and in anonymity

 

[Neunistiva]

Hello, it's true in the early years it was an alternation of periods of improvement (in summer)
in which I thought I could heal ...... and periods when I got worse (in autumn-winter),
in the cold season I even feared dying and lived in anguish and helplessness, often at home to treat me from colds-influences, sore throats and headaches; then slowly I learned to live with the disease,

I learned to avoid the virosis, headaches and bad throat using the hat and scarf, I learned to eat lighter to reduce digestive problems and cuddle my joints with light gymnastics and walking ....; in short words
I resigned myself - contented to live like this.
492/5000

The onset of my illness was flu-like, with low-grade fever 37.2, slight sore throat and sweating,

Me, is that you!?

You described my onset and progression exactly. I've "only" been sick for 9 years, though. And damn 37.2°C, what's with that number?

 

[unto]

I Neunistiva,
the number "37.2" refers to the body temperature that normally
it should be under 37 ° C, in fact at the beginning of the ME I had one
small fever 37.2 precisely.
Do not worry the worsening is minimal ....

It must be considered that this debut is that
of those who ingested the "germ" from the mouth / nose, those
instead they have ME contract with wounds or transfusions etc ...
they will have other initial symptoms.


I take the occasion to clarify that when I talked about incidence rates
of ME in the population, I also considered that part of fibromyalgia patients
that clearly are ME; unfortunately the vast majority of people
sick do not emerge in the statistics because fortunately they can live with the disease by using a few remedies such as: nutrition, prudence, supplements ......

 

[Starsister]

I hope I didnt throw off your poll results...In my case I had mono..documented by drs at 18, severe swollen neck glands for weeks, confined to bed for at least two weeks then got a bit better, but had such fatigue I couldn't walk much or up any inclines or stairs for a year. Got better some more, but continued to have recurring gland swelling for another year and took antibiotics each time. Dragged my way through college, but in full time job, always used up all my sick leave. Then by age 25 the weird symptoms of flu feeling became constant, chemical and environmental sensitivities started, neuropathy in hands and feet, and body pain.

So I DID get better in some ways but got worse in others. I've always considered the CFS primary because the fatigue was first major symptom and pain later was the primary debilitating factor. Over 40 years later I feel like I have been through multiple stages or evolutions of "something". My symptoms now have evolved to neurological, colitis, vertigo,sensory overload, spinal degeneration, knees slipping out of socket..ick..Dysatomania like OI, etc. I never have had the kind of fatigue again where my legs literally fold up under me, or the frequent lymph glad swelling. I'm not sure exactly where I would place in your poll since I did have a few years where I felt the mono was really over before I started with symptoms that I didn't see normal people getting.

 

[Starsister]

Looking at your results again, had I not been so focused on research about mono the last few years, I would have dissociated myself from the mono period of my life and just thought of my age 25 yrs on sequence as something different, but I've always felt it was a recurring virus and an immune issue, as when AIDS came to forefront, I felt a sense of kindred,
since I hadn't heard of CFS or fibro yet.

 

[Neunistiva]

I Neunistiva,
the number "37.2" refers to the body temperature that normally it should be under 37 ° C, in fact at the beginning of the ME I had one small fever 37.2 precisely. Do not worry the worsening is minimal ....

I'm sorry, I wasn't clear enough. I did understand you were talking about body temperature. All my life whenever I would get a cold, or sore throat my body temperature was exactly 37.2°C (99°F). When I was healthy I would be under 36.8°C (98.2°F). Also now whenever my ME/CFS flares, I get exactly 37.2°C (99°F).

Doctors told me that's not a fever and it's normal, but there is such a huge difference in level of fatigue and other symptoms that I know they're wrong as usual.

So I was just wondering, what is with that exact number? What makes our bodies stuck at exactly the same temperature?