What is the course of your ME/CFS?

The first 3 years were relapsing remitting.
The subsequent 4.5years have been progressive with no time off for good behaviour!

 

Me, too.

Up to my late thirties I would have said I had recovered if you were my employer and that I was about 90% if you were my friend. I definitely had less stamina than other people and my brain had never got back to my 15 year old self but otherwise I was rarely symptomatic. I never would have imagined that I would relapse, though.

I've ticked relapsing remitting because I don't think I'm secondary-progressive but I do have a niggly worry.

 

I had to tick 'primary progressive' as it has been thus since having children. In the first 20 years of this disease (prior to children) I had a relapsing/ remitting quick-cycling pattern where the best remission was at about 75% ish of normal. My daily life was still affected moment by moment but I could 'fake it' (ie fake being less ill than I felt ..do people with ME ever 'fake-it' the other way around?) more easily. Subsequent to my pregnancies (I had very swift remissions to about 80% well in the final 20 weeks of each pregnancy after the hyperemesis gravidarum had eased) my trajectory has been all downhill, becoming mainly housebound in 1994.

 

I would categorise the core issue of PEM as relapsing-remitting with fairly consistent highs and lows of severity.

But if we're talking about overall QoL I would say secondary-progressive, as I have picked up other ailments along the way. Whether these are secondary issues or reflect a worsening of the primary condition I could not say...

 

There seems to me a difference between a variable, fluctuating pattern and what's usually meant by relapsing-remitting, which is true remissions (illness gone) in the remission phases.

I think I'm unusual in that for the first 23 years, I had a true relapsing-remitting patterns.

Relapse: in bed, unable to read or move.
Remission: riding my bike about for fun and exercise.
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(and no, during the remissions, there was no PEM).

 

I had taken remission to mean partial remission in this scenario. I thought if the illness was completely gone it was referred to as complete remission. Important point though!

 

I think this is a difficult question, and I am not sure that the term "true remission" can easily be understood. People clearly use the term differently. I think the most helpful approach is to try to understand how it was used in the literature surrounding the so called Royal Free outbreak (so called because it seems that there were similar disease processes occurring within the local population, and the Royal Free probably only represented a concentration of cases).

"There might be periods of two weeks in which the symptoms were mild and fever had disappeared. Such periods were often followed by marked recrudescence of old symptoms and sometimes the appearance of new neurological manifestations. In such relapses further fever and tender enlargement of glands occurred. Relapses occurred in some cases after patients had been fit enough to return to their homes or had been transferred to convalescent homes....."

 

Initially for many years it was Primary-progressive (gradually worsening with no relapsing-remitting pattern) and I didn't think any leveling off was possible, but I did have a period of time for about a year where it did seem to level off and not get worse, which was a surprise to me.

 

I think there needs to be a fluctuating option as well as relapsing remission. I think many people's illness fluctuates but it doesn't mean they have any well periods, just different degrees of sickness.

 

There isn't an option for staying the same either is there?

 

The first two options both presume remitting, do most people experience some form of remission,I never have?

 

It's hard to decide. So I haven't clicked on the poll. I'll let you decide what to do with me!

Prior to treatment with ARVs I would have described my pattern as definitely progressive. Plateaus for a while (but sorta slow sliding), then a ratchet down from which I didn't escape. Then a period of sort of stableness (slow slide) and another ratchet down again. Looking back I would say I was "severe" in late 2015, or certainly at the severest end of moderate.

Now after ARVs I am still affected by ME, but probably at the "moderate" end of mildly affected. I keep trying different things - some help, some don't. My state is a wavy line - with days/weeks where I start to feel concerned that I'm sliding downwards again - then some days where I feel almost "well", but these "well days" don't tend to hang around long enough, for me to be confident of my actually "being well". Yet I can get out now and function in the world - sometimes almost normally.

So:
Prior to ARVs - Progressive relapsing
After ARVs - Relapsing Remitting

Something changed with the ARVs but not everything.

 

Like a lot of people, I don't fit into any one category. I'm still in a phase of having worsened, which began in March 2016. I have lost a lot of my memories and abilities to function since then, but am fairly reassured that it's not dementia.

I now have times of day when I am pretty useless mentally, but even in this worsening I have had spells of feeling quite normal, which are sadly gone next day or later the same day.

I've had ME since 1995, and was bloody intelligent until March 2016.

 

I wish I could find how/if I answered your original poll, @JaimeS, but I can't find anything with a search in 'polls' on the other site before May 2015. Could you show me the way, please, perhaps in a private message?

 

Back in 1999 Dr.Cheney discussed the 3 phases and I think for the most part it fits my experience.

He described "phase III":

"Within my boundaries, I don't feel too bad. I'm pretty comfortable. My problem is that every time I try to exceed those boundaries, I crash. I get worse. So I haul back within my boundaries, and I'm now comfortable again." With the loss of dynamic hormone response, patients cannot cross boundaries. Crossing boundaries requires dynamic response capability, and they no longer have it. In addition to the problems with dynamic hormone response, Phase III may also involve damage to the DNA of energy producing mitochondria. The loss of a portion of mitochondria puts an energy ceiling on patients.

The extent of the boundaries can vary among patients, depending on the amount of injury done during the first two phases. By no means is everyone home-bound or bedridden. And there is hope. Dr. Cheney does not believe the endpoint of Phase III is totally fixed. There is a good deal of plasticity to the central nervous system, and there can be significant resuscitation of brain function, and perhaps even the mitochondria may not be completely lost.
It is possible to have elements of all three phases going on at once, but usually there is a dominant phase. But if you look at how people change over time, CFIDS patients are all headed for Phase III - a point in time when they're pretty comfortable within their boundaries."

Does the work through Dr. Davis fall along the same pathology today? I seem to recall Janet Dafoe explaining that there was no mito DNA damage. For me, it feels as though I caused damage from doing aerobic exercise over and over again during the phase of illness when I was feeling improved. I never regained that baseline and finally realized I needed to stop this exercise nonsense.

 

Started off mild - steady, gradual worsening over the years. Each worsening was the result of over exertion as I was still struggling to exercise and keep my fitness and didn't know better. The only 'scientific' info I could find online were to keep exercising - and I did seriously consider doing this through my crashes but thankfully never did.

Didn't start any treatment until I became severe and couldn't leave the house for 3 months. Perimenopause and Menopause definitely made things worse as well.

After 15 years of steady, consistent decline from mild to severe... now I am in remission due to diet and treatment. No cause to celebrate as two daughters are ill - one recent and worse than I was at my lowest.

One daughter - ill since adolescence and initially improving, severe to mild/moderate (working part time). Now more or less consistent.
Other daughter - ill for 1-2 years, severe - housebound, 95% bedbound. Getting worse not-so-gradually despite active rest.

I can't add them to the poll....

 

I felt like this too and had the same experience with exercise. However, in remission, I find I'm able to do everything - whatever was happening to me had no permanent damage.... which leaves me very hopeful !!

 

Looking back at 24 years of having ME, diagnosed after 20 years, I´ve gone from being homebound to almost being well when I not longer have been exposed to some of the factors that Naviaux presented as causing the Cell Danger Response; amalgam/mercury, mold and infections like Lyme and Yersinia.

A year ago I had a pneumonia, and again I´m homebound. Why? I have had hours of being well during this period, so I´m sure there hasn´t been any permanent damage, like in your case @Kafka.

http://www.sciencedirect.com/science/article/pii/S1567724913002390?via=ihub

Quote from the Introduction in the article (my editing of the text):

" ... The cell danger response (CDR) is an evolutionarily conserved cellular metabolic response that is activated when a cell encounters a chemical, physical, or microbial threat that could injure or kill the cell.

Common microbial threats are viruses, bacteria, fungi, and parasites. Physical threats include heat, salt, or pH shock, or UV or ionizing radiation.

Chemical forms of danger include heavy and trace metals like lead, mercury, cadmium, arsenic, and nickel, certain electrophilic aromatic chemicals like the plasticizer bisphenol A, the chemical flame retardants like the brominated diphenyl ethers (BDEs), and certain halogenated pesticides like chlorpyrifos and DDT.

Psychological trauma, particularly during childhood, can also activate the cell danger response, produce chronic inflammation, and increase the risk of many disorders (Ehlert, 2013).

Mixtures of these factors and susceptible genotypes have synergistic effects...."

 

Hard to decide. Relapsing remitting implies that I would have periods of better health. The only remission of symptoms was when I was pregnant. Other that that it is the bad or worse type of fluctuating with a steady downward decline. It seems I never quite get back to the previous level with each sustained bad patch. Apart from when I was pregnant I don't have any periods of time when the symptom lift to anything like feeling well. So I don't fit into any of your categories. I think fluctuating with a gradual downward trend. I have been ill for over 25 years.

Edited to add that I didn't click any option because I don't fit any

 

This fits my pattern too, although my remittings have occasioanlly been quite good, the general trend over 24 years has been of decline.

Perhaps you could add the option of + also a long term remission? There are a number of us long timers around who have had long (for years) remissions to near normal. I had one between the ages of 27 and 38. My daughter who was also ill young, but recovered to near normal may also be following this pattern - until she gets older or has a big viral or bacterial insult we cant be sure. Its a waiting game.

During my remission i had two more children and could exercise, but i could never build my stamina and the type of fitness other people were acheiving with the same level of exercise was out of my grasp. Everytime i exercised i had the feeling i was going to die when i stopped, and this never went away. Infact i have had this all my life and presumed it was normal.