Data/info request from Robert Phair for Relapse/Remit people

https://forums.phoenixrising.me/threads/the-ido-metabolic-trap-guy.62727/page-11

"I need to know, from relapsing-remitting CFS patients, whether the cycle of relapse and remission is regular or variable. In other words, if you measure the time from one remission to the next remission, or from one relapse to the next relapse, is that time relatively constant, or does it vary a lot? Also, is that cycle time measured in days, weeks, months? Can you put a number on it?"

 

thank you i've replied at 'the other place'.
(i was relapsing remitting for a few decades)

 

Lol...that’s what I would do...reply at the other place so that he can see it...

 

I always thought that was a crucial question and would be happy to answer it. But I'm not returning to the other place to do so.

 

How about those who have an answer but prefer to post it here do so, and after a while we can alert Prof Phair in some way to this thread so he can have a read through himself?

 

A remission would be being symptom free. I've not had remissions, but rarely periods where I'm feeling much better. It seems random.

 

I don't know if my illness counts as the same thing with a 7 year remission in between that was virtually symptomless or I have had 2 separate episodes. I think it is a very important question.

 

I don't know what's on the other site but I agree with @SallyC that there needs to be some parameters set as to meaning of things.

 

I struggled to follow the thread at the other place, so will return there when I am more with it.

Like everything to do with ME there is no straight forward answer to the question of cycles in relapsing and remitting forms of our condition, at least for me.

I suspect there are for me a number of cycles happening at once, but it is hard to say what relates to external factors (my activity levels, PEM, other health factors and environmental factors) and the inherent nature of the condition.

There are daily variations, weekly and monthly variations and changes over years and even decades.

My initial onset was sudden (Glandular Fever), I can pin point it to a specific time on a specific day, with subsequent off work for two weeks/at work for two weeks for a number of years till I went half time at work. Then gradual improvement for several years until I believed I was fully recovered. This later turn out to be remission, albeit complete, rather than a recovery. Over time I increased what I was attempting to do.

Then after a couple of years I had a dose of flue and a severe relapse, leaving me more impaired than the initial onset. A number of years mainly bedbound, forced to stop working and then started gradually improving overall though with ongoing shorter term ups and downs. Through not approaching premorbid functioning. There was a further more significant sudden relapse following a day of physical exertion, that returned me to being bedbound. After several years, having completely cut back on any commitments, again there was gradual improvement.

Then I started doing more again and took on other commitments, this improvement continued for a number of years with shorter term ups and downs. This time my next relapse was gradual, taking me over two years to reach my most impaired [to that point], deterioration continued until all commitments were cleared and practical support for daily living activities were sorted. Slow improvement with ups and downs is where I am currently at.

Trying to transfer this into a graph of say time not lying down each day or a graph of how I rated my health would not produce a tidy or smooth curve.

I suspect that all others things being equal if I reduce my activity to below my energy envelope at that time there is gradual spontaneous improvement in the underlying condition, however this is precarious and other infections or over exertion can trigger relapses, however each major relapse is worse than the previous with more symptoms involved and that each phase of remission involves less improvement than previous remission phases.

 

I would argue that it is possible to have either a complete remission or a partial remission, though it is important to be clear which we are talking about.

I agree that there is difficulty in distinguishing between a complete remission and recovery, given we do not have a complete understanding of the underlying condition.

One possible way of distinguishing the two at present might be to say that complete recovery should mean that the recovered person has the same rate of developing the condition again as that of the general population, where as some one who is in remission has a much high probability of developing subsequent episodes, ie a relapse.

Reading people's accounts of 'recovery' on forums, there are a significant number that have to take care to avoid getting worse, and have off days or off weeks, suggesting for them remission might be a better description than recovery.

 

Does a remission require a time frame? I initially recovered from the viral infection only to have a relapse very shortly after I returned to work.

 

1-4 years of relapse followed by 1-4 years of partial remission. Until it become chronic without significant remissions after about 25 years.

 

Does relapse/remit mean free of all symptoms and able to function normally at healthy level? If so, I have not experienced that. I am never free of ME. I may have days where I can feel near normal but it really isn't normal because I get PEM and I am resting all afternoon and evening to keep from getting severe PEM.

My ME is more fluctuating, up and down the baseline levels and PEM can range from very severe to moderate.

 

Something I remembered now is that in the early phase of the illness, there were a lot of fluctuations (timeframe: days). Over time (a couple of years) this pattern gradually changed so that the bad periods lengthened and the good periods shortened (timeframe months) and eventually it became chronic. This seems entirely consistent with continued overexertion causing more and more symptoms.

 

Yes, that is me too. So much going on in this illness.

 

Yes, certainly short term fluctuations too. But the overarching multiyear relapse/partial remit periods were very obvious to me long before I was diagnosed by a doctor with ME/CFS.

The length of the relapses/partial remissions didn't seem to change over time, however. I don't know if this is a clue to anything.

 

There were a few times, maybe 4 or 5 times, in the first couple of years of illness that my otherwise constant dizziness either let up entirely or was greatly reduced. Unfortunately, this never lasted for more than 15-30 minutes. I recall feeling generally "better" during these brief periods, but that may have simply been due to the reduction in dizziness. It was mysterious, but it suggested to me that the disease was was being caused by some sort of ongoing "interference" as opposed to 'hit and run" damage. I'm pretty sure this was discussed on another thread, though it may have been at Voldem... uh, the other place.

 

I had a very clear pattern of relapse/remission during the first eleven years. This followed an acute onset with atypical glandular fever - "atypical" because, although diagnosed by GP and consultant physician, the blood tests were negative. There was no period of complete recovery from the viral illness before the onset of the pattern.

The typical duration of the cycle was three weeks and probably never exceeded five weeks between relapses. The relapse could be quite sudden, making it a struggle to get home. The relapse would involve 2 to 3 days in bed mostly asleep, before gradual recovery. It was usually a case of on the third day he rose again. By the fifth day I would be back to 80/90% and capable of managing some sort of reasonable life-but it is difficult to maintain employment when one is so reliably unreliable.

On occasions I would go to bed one night and wake up ill, or vice versa. I was never show how the BPS model accounted for this-unhelpful dreams, perhaps.

After 11 years a downturn led to more regular illness with only occasional and sporadic remissions, and at about 30 years it lapsed to permanent condition without remission. Yet.

 

What @strategist said.

 

I don't have relapse/remit. I was just slowly getting worse and now slowly getting better.

First four years I wouldn't have even said I was ill, I had enough good days, where I was normal and then would do "too much" and become ill again. In the beginning I just thought it was weird that I was ill that often, plus I couldn't do sports anymore. After an accident and surgery, I just lost so much strength and stamina that I couldn't train myself to my old level again and that's when I was really pushing this idea of: this is really abnormal. Off course, that's when I started pushing myself to become better, did GET and became even worse.

Looking back, even in those first four years I can't say I had remissions, it was just the normal cycle of feeling ok, doing stuff, getting PEM, resting and feeling ok again. Just less pronounced and I could do way more without getting ill.

I do have a definite feeling my hormones have something to do with it, because I always have a bad week around ovulation and around my period I have mostly good days.