Sudden or Gradual Onset?

[justy]

In terms of clusters, epidemics etc my thoughts are that as M.E is underdiagnosed we would simply not know if clusters or epidemics were happening around us. They are better documented in hospitals etc as it is clearer when you have a lot of people in one place. If i live in a big city and come down with M.E. how will i ever know if others around me are also coming down with it. Especially when one person is told they have depression, one is told they are neurotic, one is told they PVFS, one is told they have anxiety etc. If you get ill after having a virus for example,very few people would go staright to the GP - often it takes months or years to get a diagnosis. This is skewing the information we have about who has it and where.
It took me 17 years to get a diagnosis, from when i became acutely ill.

BTW does anyone know anything about the Great Ormond street hospital nurses outbreak in the 70's? i ask because i spent quite some time there in the early seventies and had an operation there.
All the best, Justy

 

[taniaaust1]

I personally believe there should be a malatory (not sure if i have the right word) .. reporting system for ME which also tracks the year people got sick from... just like there is for many other illnesses from measels to other things, in many countries.

Why arent the health depts tracking a disease which occurs in outbreaks and is seriously disabling for many?

 

[Snowdrop]

Dr. Byron Hyde, a very experienced researcher, sees ME as always being sudden onset and CFS being a catch-all name only, which covers many other possible conditions.He is not the only doctor or researcher who thinks this way, is my impression. Yet, the best definitions we have, the CCC and ICD, still say sudden or gradual onset. Here is a hypothesis I have which might explain at least part of this discrepancy:

Children who get ME are known to have better recovery, in general, than adults. Some even seem to recover fully. Some claim they have, but on closer examination, according to Dr. David Bell, really have not, but have integrated ways of coping so well--rest, careful diet, etc.--that they seem to be doing better than they are. Nevertheless, young, more resilient bodies do seem more capable of apparent recovery.

What I wonder is if, for those infants or children who got ME and were probably were never correctly diagnosed, then went on to apparent recoveries, could it not be that later on in life, with further stresses, illnesses, or just normal aging, the original ME then rears its head again? This is what is known to happen with Polio, and ME as at least sometimes the result of those same enteroviruses responsible for Paralytic Polio.

I think this pattern of apparent recovery then later recurrence might explain some of the gradual onset cases. The body never did heal completely but only mounted a successful defense and many compensations, which, after decades perhaps, have been eroded. I think this is what happened to me. I wanted to present this as a hypothesis which might account for gradual onset.

And/or if, ME/CFS (using the whole, current designation) turns out to be an autoimmune illness, aren't these known to develop at different rates in different individuals too?

This reflects my illness history. I don't really know when to say that my ME started as I have experienced one neurological symptom after another all my life although only within the past decade have I been severely unable to function with no real improvement after overexerting.

There was a very specific event (activity) and therefore date when the severe phase started so is that the moment of ME? There is no doubt that it was triggered by the specific exercise I did that day. I believe because of compromised health I had been pacing unconsciously before then living less fully than my pears and wondering why I couldn't do things both cognitive and physical that were not difficult for others.

And here I'm going to wimp out and say while I'm sharing my own opinion I'm not looking to respond and endlessly debate and defend it. I don't have the luxury of that kind of energy (physical/mental emotional) at present. I like to think this forum allows me that.

I could be very wrong here but from what I've read so far it seems that the "Canary in a Coalmine" movie is going to undo a lot of ME education that people like me with non-flulike illness onset have excruciatingly tried to do with family and friends. From what I can gather according to the website for CiaC I don't have ME and the CCC are not referred to as the gold standard for defining the illness despite the recent speaking out of experts on the subject.

My understanding is that she has not been ill all that long. As we are aware from the Maureen McCutcheon thread you can be ill with this disease without a thoroughgoing understanding of what it's all about. Thus the complexity that is one of the hallmarks of this illness.

I will be happy to be informed if have have made incorrect statements of fact, I'm certainly capable of misreading.
But if the facts stand I am concerned that people who see the film who have no understanding of the illness might come away with a different understanding than the one I have as a PWME.
respectfully,
SD

 

[Sing]

Hi Snowdrop,

From your description, I am like you in not being Sudden Onset, but rather accumulated the symptoms over the years. Though there was a particular time when the cognitive, memory, bad balance and P E malaise problems really kicked in, on top of the insomnia, low immune function and steady aching. Since then the serious hypotension, chemical sensitivities, sensitivity to light and noise, neuropathy followed. So my body seems like a tree being slowly felled. Fortunately I am not bedridden and can, slowly and inefficiently, take care of myself in a very small, easy home.

As far as I know, most of our experts believe there are a number of subsets. What everyone would like is agreed upon biomarkers to identify at least some of these. I wouldn't mind so much the slow progress if it were proceeding in a straight line, but often things have just gone around in circles. Hopefully, the Open Medicine Institute, for one, will pull together enough data and expert opinion to keep the science on track.

 

[Snowdrop]

Yes. Your experience sounds similar.
Being in Canada I'd have to wait for the gov't to approve Rituximab if studies proved positive. That would take a while no doubt.
I find myself hoping that serendipity will bestow us with promising treatment and/or diagnostic markers through someone else's research ie MS, parkinson's, autism, ALS, RA etc. Til then we soldier on.

 

[searcher]

@Snowdrop - I don't think that Jen Brea will try to differentiate too much between acute and gradual onsets but could be wrong. I actually think that she had a gradual onset-- she had a bad flu but didn't seem to get the debilitating symptoms until a year later. And she talks a lot about the impact of the environment and family history of illness, and discusses symptoms she had before getting sick. Although she hasn't been sick for long she has researched a lot of the theories about ME/CFS. I think her interview at http://blog.ted.com/2013/10/25/illu...ithout-end-fellows-friday-with-jennifer-brea/ is worth reading if you haven't read it already.

I also had a gradual onset. I can point to specific events that led to downturns (mostly mold exposures and bad flus) but definitely can't say I was well one day and disabled the next.

 

[Snowdrop]

@Snowdrop - I don't think that Jen Brea will try to differentiate too much between acute and gradual onsets but could be wrong. I actually think that she had a gradual onset-- she had a bad flu but didn't seem to get the debilitating symptoms until a year later. And she talks a lot about the impact of the environment and family history of illness, and discusses symptoms she had before getting sick. Although she hasn't been sick for long she has researched a lot of the theories about ME/CFS. I think her interview at http://blog.ted.com/2013/10/25/illu...ithout-end-fellows-friday-with-jennifer-brea/ is worth reading if you haven't read it already.

I also had a gradual onset. I can point to specific events that led to downturns (mostly mold exposures and bad flus) but definitely can't say I was well one day and disabled the next.

Hello searcher

Thank you for responding with your thoughts to my post. As I'm in the midst of packing for a move I will have a look at the interview when I can. There is so much hope from so many riding on this film. From what you say above it sounds very positive and I too hope that it will bring much needed exposure to our plight.

My guardedness stems from having been sick so long and how complicated it has been to personally untangle and to express to others what this is like in a way that they might understand.

From what you say it would appear my fear is unfounded. And at the moment I admit that I cannot remember what specifically I read that started my concern. I wish her good luck.
SD

 

[wastwater]

I was sudden onset after EBV

 

[justy]

This is such an interesting thread, that I had just been alerted to after Sing 'liked' one of my posts on it. I have now started reading it again and thought of lots of things I wanted to say - only to see I have already said them on this thread when it was first active.

Doh! my poor M.E brain.

 

[Sing]

This is such an interesting thread, that I had just been alerted to after Sing 'liked' one of my posts on it. I have now started reading it again and thought of lots of things I wanted to say - only to see I have already said them on this thread when it was first active.

Doh! my poor M.E brain.

I do that ALL the time!

 

[beaverfury]

Sudden onset at 39 after a virus. Some symptoms of neck pain, POTs and anxiety in the previous months, perhaps from tick bite. 5 years ill so far.

 

[PNR2008]

Sudden onset at 39 after a virus also. First symptoms were knee, jaw and hand pain and general weakness. Then by a year later couldn't remember my dogs name.

My history is almost dying of pertussis at 9 months. Complex migraines at 11 years. Then a fall at 33 years caused back surgery which resulted in arachnoiditis (inflammation of the spine) probably due to the dye used in mylogram. I didn't bounce back from the surgery. I lost 20lbs on a 5'6" frame that weighed 120lbs, could not carry briefcase or purse for a year.

By the time I got CFS/ME there was evidence of enchephalitis and got diagnosed within a year. I was raised with a sister who got rheumatic fever at 10 yrs (I was 7 yrs). Polio was rampant in my state growing up, fainted after 4th polio shot.

 

[Christopher]

I had very light and vague CFS symptoms until I moved into a house with toxic mold hidden inside drywall. Within 2 days, I crashed into moderate and had to lie down after being upright for a few hours.