ME/CFS progression in years and stages

[bobbler]

I am really wary of CPET becoming a standard for testing patients for this very reason. PEM is not benign it can cause permanent worsening and that worsening can result in our death. CPET is not ethical even if it is an objective measure in a field desperately looking for one to use on trial outset and exit its far too dangerous for anything other than the study of PEM itself. Even then I think we might look back on those studies and the harm they did differently in a few years.

Yes indeed it’s obvious it would be a huge risk, and somewhat terrifying when I think of how many (non me/cfs) people out there think re: testing people

I just had not yet heard/met a first hand account, perhaps because they aren’t common here still.

I’m trying to not be intrusive or inappropriate or insensitive to someone as it is their life and health but also for that reason also very important

it has struck me whether we have any pages collecting the impact of two day cpet like these?

 

[wastwater]

I think I’m following the timings of MS and just to confuse things even more my genetic disorder seems to come with a MS mimick that may even present in childhood

 

[Braganca]

Have I ever read correctly that it was 2 day CPET preceding that last deterioration to severe?

Yes, I did the two day cpet, I appeared to recover within a week, but realized a bit too slowly that my baseline had shifted to severe. I think I didn’t adapt quickly enough to my new baseline and pushed my activities a few times. I became severe and mostly bedridden, deteriorating over the following 3 months.

 

[Braganca]

Yes indeed it’s obvious it would be a huge risk, and somewhat terrifying when I think of how many (non me/cfs) people out there think re: testing people

I just had not yet heard/met a first hand account, perhaps because they aren’t common here still.

I’m trying to not be intrusive or inappropriate or insensitive to someone as it is their life and health but also for that reason also very important

it has struck me whether we have any pages collecting the impact of two day cpet like these?

I did not feel I was warned sufficiently by the team at Ithaca. I reached out to Maureen Hanson a couple years ago when she was involved in a recent cpet study. She was quite dismissive of the fact that it caused me permanent deterioration, I felt implying that it would have happened anyway. She told me that in the study they were doing that all 80 participants recovered to baseline. But I believe when it was published it said that one deteriorated and did not recover to baseline. I don’t think that is acceptable odds.

 

[PrairieLights]

Mine has been two years.

Year 1 - mild but at the time I thought it was awful, now I wish I could do that much still.

Year 2 - Mostly moderate, long periods of moderate and a few brief periods of mild (for a week or two now and then).

I am still hoping it will somehow end up being something else but losing that hope that it will be fixed.

 

[OrganicChilli]

Year 1, 2, 3: I didn't know I was ill and I certainly wasn't disabled. Some tiredness at the end of each day that could be alleviated with a quick nap. I can't even pinpoint when it started. I didn't have PEM back then and wouldn't classify this as ME/CFS, but something was off thanks to covid and/or the vaccine.

Year 4: the same feeling of delayed tiredness after a short walk. I was basically housebound from the get go. No muscle problems, but short walks now trigger PEM. No symptoms at baseline, no fatigue, but severe screen intolerance.

 

[Kiristar]

Mine had phases. But when I lost ground I've never quite regained it. Overall I see the disease course as very gradually progressive over decades.
1995 (Age 20) V1 Mystery virus in Germany
1996 V2 Glandular Fever
1996 6 months of viral fatigue apparent recovery but could not exercise quite so intensely.
1997 - 2008 Very mild then mild ME with regular winter dips. PEM only after exceptional exertion or overwork
2009 - Regular weekend PEM after longer dog walks
2017 -Endometriosis diagnosis. 2 operations.
2017 - V3 viral meningitis dramatic drop in function
2018 - 6 month phased return to work then permanent collapse off work. MECFS diagnosis
2019 on - Wheelchair user. Gradual deterioration
2021 - Severe grade.

 

[PrairieLights]

What is CPET?

 

[Utsikt]

What is CPET?

Testing how well the hearts and lungs function during exercise, often using a stationary bike.

Random google explanation:
A cardiopulmonary exercise test (CPET) is an evaluation of the cardiopulmonary system.

Physical exercise requires the interaction of the physiologic mechanisms that enable the cardiovascular and respiratory systems to support the energy demands of the contracting muscles. Both systems are consequently stressed during exercise. Their ability to respond adequately to this stress is a measure of their physiologic competence.

 

[Mij]

I would say that my 'progression' has been from this constant viral/immune activation that has increased over the last 15 years. I'm in a constant cycle 80% of the time. It never ends.

My exercise routine is fine when I'm going through a 'good cycle'. I return to my baseline.

 

[jnmaciuch]

I did not feel I was warned sufficiently by the team at Ithaca. I reached out to Maureen Hanson a couple years ago when she was involved in a recent cpet study. She was quite dismissive of the fact that it caused me permanent deterioration, I felt implying that it would have happened anyway. She told me that in the study they were doing that all 80 participants recovered to baseline. But I believe when it was published it said that one deteriorated and did not recover to baseline. I don’t think that is acceptable odds.

Just wanted to note that I'm so sorry you had that experience--both the deterioration and the dismissal afterwards. It must be so unbelievably disheartening to have your concerns dismissed like that when you were the one living the long term consequences (and the goal of the study is to help pwME!)

 

[jnmaciuch]

My ME/CFS had a slow progression over a period of months, just getting more and more tired until eventually I had to drop out from college. I didn't have a clear viral onset, though I'm sure I had various colds and flus living in a college dorm at the time. I had pre-existing Hashimoto's and my doctors were convinced for at least a year that all the issues were thyroid-related.

Initially it was mild, I don't think PEM even featured that often. Retroactively I realized that it followed days of continuous exertion, though it was rare enough that I just wrote it off as frequent colds.

Eventually I progressed to moderate, though was still able to leave the house occasionally for doctors visits or to walk the dog. There actually were several days where I could push myself if necessary and be out of the house for several hours at a time, but I always paid for it dearly afterwards with PEM. Couldn't work or do school, was able to do some things around the house, but overall pretty limited.

A few years in I finally got a stimulant for ADHD, and with that I became more mild. Could leave the house for a few hours, but around 2-3 hours in I would start feeling pain, stiffness, exhaustion, and brain fog, which would escalate overnight and continue for days. I couldn't do this on back to back days, but was definitely leaving the house more often. Could keep up with part time work and school.

Recently I started taking malic acid, which has allowed me to be out of the house for hours without negative consequences. I still can't do it too many days back to back (it feels like something is "brewing" in the background even if it doesn't spill over into PEM). And I still have cognitive limitations that aren't helped by the malic acid. But overall I would consider myself fully mild now, definitely the closest I've been to "recovery." I'm able to do grad school with a 75% workload (though every semester I end up having to push myself and burn out for a few weeks). Hopefully this cycle will end soon now that I've permanently joined a lab and have more flexibility.