Discussion in 'General ME/CFS News' started by Ember, Jan 11, 2013.
I was very struck by Dr Chia's remarks about the differences in remission and relapse rates between men and women. He sees men needing less treatment and bouncing back harder with fewer relapses than with women.
Looking forward to more snippets from Dr Chia - shame the nuggets are so small!
Yes, me too. I wish he had had time to go into "why?"
That is interesting Justy, As you know i certainly changed the level of illness i had quite dramatically. so much so, that when a patient reaches that level of improvement, it becomes suspect that he even had ME/CFS to start with. All i know is i had two shrinks diagnose cfs (one was wessley. No Shrink in the uk will put ME its cffs to them ) one consultant agreed it was like ME/CFS.
I certainly had the classic signs. starting with flu like symptoms. the progressing to constant illness. PEM was hard to judge. because i was ill nearly all the time. with just 2 or 3 days before the next bad wave hit.. but i certainly did seem to react to excercise.
.still have many echos of the past still in me. But a far cry from those horrible times. Though i just developed a abcess where the sun dont shine lol. had surgary to drain it. things have been tough the last couple of weeks. there now suspecting Crohns disease. But its uncertian yet.
I wonder what the cause of ME really is. will there be a unifying reason that will show most patients have a similar disease reason. I think this unlikely. though i know that view might be unpopular. And might be completely wrong anyway.
But the diverse, symptoms and severity, and outcome, and even the huge differences in onset, symptoms. suggests to me. we may not all be suffereing the same condition at all.
I know PEM and the other classic signs are used as a strong guide. But thats not a bio marker, its a guide, that can have many different reasons, and possibly confusions masking what really is happening, in different patients.
presenting with different symptoms. severity, onset type. remission relapse pattens.
The only thing i see as concrete, that unites many patients. is some kind of viral infection. starting the ball rolling. even then thats not always true for everyone ? I know PEM is seen as specific to ME. but as mentioned earlier. that may or may not turn out to be true for all patients. As i seemed to suffer PEM, yet i recovered more than most dver a long period of time.
The Flu that started my ME, was exactly like flu. aches pains fever cough ect. yet no one in my family ever caught it.
Now thats not only weird. It proves how similar symptoms can be shared across very different illnesses
So to say i have ME because of this or that symptom. might be like saying i have flu, because of aches and fever.
well i have found that may not be the case at all.
. 10 people can have the same or similar symptoms. but its intirely possible for 10 diffrent reasons
I wonder if the experts will find men, can make much fuller recoverys than women. if so. i wonder why ?
I know i always give questions. Not answers. Another thing i notice a lot, is that what seems to help one patient, often does not help another, i read constantly on here, i tried this treatment, and i am much better, and then 10 replys saying, i tried that and it didnt work for me ? or it made me worse, Boy have i seen that as a pattern
Theres even some quite wacky treatments, that some patients claim has helped them a lot.while others say it doesnt do a thing ?
I know we are not all the same
.Though.often with the same disease ( lets say a different disease to ME/CFS ). many patients respond to similar treatments fairly consistently. I ceritanly get the feeling much more consistently than with ME/CFS. what this means is hard to tell. other than. ME/CFS is a lot more complex than we can ever imagine.
Its also a reason for dis beleif amongst different health proffesionals i am sure. As most like things to be nice and clear cut. But it seems no matter how people try. ME/CFS does not like to be pidgeon holed, as much as other condtions. its much more diverse. Often contradictory. and quite confusing in many ways in my opinion.
Sometimes i think its a throw away diagnosis. it actually doessnt exist. and will not be unified across all patients. There may well be similar dysfunctions happening to a lot of patients, producing similar symptoms. but with diffrent onsets, different reasons, different outsets.Though at this stage. its possible auto immunity, may produce these very diverse and contradictory things.in which case. its not really ME/CFS its auto immunity. producing a wide range of variations amongst patients. I suspect a lot wont agree with much of what i am saying here ? some may get defensive. its hard living with a unceratin illness. its much nicer to have a name to put to it. Ive always hated the name. and never fully understood all the contradictions. that surely others notice on here ? But a illness or illnesses does unite us all. but how closely i sometimes wonder ?
Good interview. Seems like a great doctor.
I've tried lauricidan with some success in the past. Might be another one to keep on the list of antivirals.
Haven't tried oxymatrine yet. Forget the where to get it and what brand to get. It's probably on this forum though if one decides to search.
At the end of every ME/CFS Alert episode there's an appeal for sponsors. I wonder if there's much response. I agree with Chris Cairns: “Llwellyn King does such a fine job at interviewing his subjects, proving that interviewing is an art. And his subject here, Dr. Chia, is about the best.”
Let me give one reason why women may not recover as well or as often, aside from things like hormones. Something has been lurking in the back of my mind for a long time. It made no sense until I started thinking about gut viruses and biopsies.
Let us presume that a person may be susceptible based on a combination of genetics and a virus. Enteroviruses are my leading choice for that - indeed I suspect its more likely that herpes viruses reactivating enteroviruses can cause ME rather than the other way around, though there are many other possibilities.
So we have people with a genetic weakness who may get ME. In terms of sex chromosomes, men are XY, women are XX. Yet its not that simple. Men are universally X1Y1, wheras some cells in a woman are X1 and the others are X2. This is because one X chromosome is always silenced, though I suspect this is an oversimplification and its second copy of the gene thats silenced, not always the chromosome - my knowledge on this is a decade out of date. If either the X or the Y chromosome has a factor responsible for causing ME or increasing severity, then women may find parts of their body susceptible, and other parts not.
I would like to see a breakdown of biopsy results from men and women for enteroviruses.
Further, I suspect that an 82% positive on biopsy might be more like 95% in reality. Presuming that the viruses are equally spread might not be valid. There are more likely to be hot spots (a lesion with high viral load). Now if a biopsy finds one of those, you test positive. If it misses a hot spot you test negative.
Under my XX interpretation, women are more likely to have fewer hot spots (not that this means they are less sick, other factors are in play than hot spots). They are just more likely to test negative.
Does anyone know of Chia's percentages broken down for men and women? I have not looked at this research recently. If men test postive much less often than women this hypothesis is probably wrong. If its the other way around then its possibly right. If we can identify some way of detecting proteins for latent enteroviruses, much as we can for EBV, then these tests should be run side by side with biopsies.
In short, biopsies are fallible. Such a massively high viral percentage in CFS or ME is a very important sign. Whether its causal, opporunistic, or deeply connected with other factors, we just don't know yet. It is very likely that a number of positive patients are missed, and the real percentage is much higher than 82%.
Personally, I suspect that both enteroviruses and herpes viruses might cause CFS and ME. They have similar life cycles in an active infection, and both have latent phases. I also suspect that a failure in NK cells might leave us vulnerable to either.
Hey Free - havent seen you around in a while. Im glad its because you are feeling much better Too much for me to repond to in your long post right now, but the one thing Dr Chia did say, which chimes with your experience is the much more dramatic recoviries men are making.
I dont really understand Alex's theory (my brain, not your explanation) but there is an inkling in my brain telling me could this be to do with autoimmunity - well and i suppose hormones? We know women are more susceptible to autoimmune diseases - perhaps they are more susceptible to there effects as well.
I would also have liked to hear Dr Chias theory as to why he is seeing this in his patients. That information, coupled with my age, and having been ill on and off most of my life, leave me with little hope of a full or dramatic recovery ever.
Dr Chia talks about his sons recovery - and how dramatic it has been - going back to being able to runa few miles, swim a mile in 40 minutes and do a 12 hour work day - all in one day!
I surmise from this a number of things, some of which we already know:
Being a young male who has been sick for a few years or less, and treating any virus found can bring about the best recoveries.
Hi Justy, you are right to raise the issues of autoimmunity and hormones. They have been discussed many times in the past and remain valid hypotheses.
If some of the viral response, or immune response, is more responsive to female hormones then this could produce the changes - indeed this has been the most repeated hypothesis on this, and it could be right. I was just putting forward another alternative.
Whether or not I am right (and its just a speculative hypothesis) on the XX chromosome idea, the other issue of patchy gut infection remains valid. Biopsies should have a moderate failure rate. The fact the success rate is so high tells us that enteroviruses are very important.
Women have different immune systems and regulation, though in part from hormones, due to their capacity for childbearing. A child in the womb has to be protected from the mother's immune system. I do not really understand all the angles on this as its not something I have ever investigated in depth, but there is a case for some women going into recovery or partial recovery during pregnancty, and while most relapse after birth I think, I have heard of at least one case when the remission was permanent. That alone is strong evidence that the hormones and changes to immunity involved in pregnancy are very important to recovery.
I can't help but think there is a high degree of autoimmunity to this illness. Many of us did not get initially sick from a viral episode. I never had a viral episode. Other people on PR got their first symptoms from car accidents, emotional stress, environmental toxins, and on and on.
If you have many patients getting the same set of ME symptoms from multiple insults, then it leads me to believe it is not a pathogen at fault-- it is something in the patient that allows a change to take place.
its all interlocking, infections, immune defiencies, autoimmunity, adrenal dysfunction, maybe we could call it EIB everything is buggered??
That's fascinating, Alex.
For the other readers, X and Y chromosomes carry some genes which are not related to sex differences. Some of these genes are the same on the X and Y chromosome.
To update the status on the two X chromosomes, it is actually very interesting. Of the two X chromosomes women have, one will be generally 'turned off' (we used to call this a 'barr body' but I think that's an outdated term now). However, some regions of the 'off' chromosome may be turned on, and some regions of the 'on' chromosome may be turned off.
Of course, 'turned off' means the chromatin is very tightly packed with 'tags' on the histones and whatnot, signalling the cell to leave it packed (except during replication).
was a bit long winded Justy. apologies.Not sure any of my points are valid anyway. its just my gut feelings which i agree dont say much to be honest. I find a lot of those comments quite uncomftable. As it always feels to me. that there is less unification in this illness between maybe subsets of patients. than i understand. others may not agree. but i think the signs are there. Sometimes i see them everywhere. And are either glossed over. or guessed at for the most part
what this means is hard to tell. but its bothered me for years and still does. The ME/CFS symptoms may not be ruling Justy. but i am far from better. The abcess, and possibly Crohns (yet to be determined ) isnt much fun. Im not as stable as i sound really. Now seem to have slight blured vision in one eye. pains in the head and eye that come and go. on that side
(though the pains ive had for years ) the slight blured vision, seems more obviouse now. Almost feels like the two eyes are not working well as a stereo pair ?
Always scared about something it seems. its winter so my flu phobia is in full swing. Never know whats next or around the corner to be honest. But i guess many feel like that on here. And experiance similar. so understand. Youve always had great compassion Justy. And its a trait that i think marks you as a wonderful caring human being. with a full heart. one that is full of warmth. I dont really know you. but think i can feel your compassion for eveyone on here. Its a Nice feeling in a uncertain scary world of illness.. And the times when its back to crying again. Just never know when the laughter will be disrupted by the hole that swallows us all up in the end. not this year, is all i ever hope for. Hope your coping Justy. its tough i know.
ps, I don't fully understand how the two X chromosomes and various repositories of virus make it more difficult to recover, but I understand how it makes it more difficult to test, and the theory is very interesting
sorry neither of you are doing very well, free and Justy.
Hey Free - i actually swing wildly between thinking there are lots of different subsets and different diseases going, to believing in one 'true' M.E. What i notice on here is that many many many of us have so much in common that it really could be the 'same' illness/disease process, but with varying degrees and maybe a couple of different types (like you might get in MS) - the way we deal with the illness varies considerably though and this could account for some of the major differences. Others of us have had many years of the trauma of no diagnosis and perhaps mistakenly labeled for years as 'neurotic/psychiatric/depression issues - this could account for the high degree of anxiety issues in some patients (myself included, although thankfully not now) as living with a chronic illness and spending years being disbelieved and dismissed by the medical proffession as well as friends and family 9even if only light heartedly) certainly takes its toll on our emotions and minds. Thats without discussing the effect of pushing throuhg for many years could have on the adrenals - leading to many of the anxiety/panic symptoms we can see in some patients.
Other patients on here i can see definately have something different to me - they have fatigue and maube some obvious tests screwed up and maybe they are also hypothyroid (for example) which perhaps is not well controlled and it seems to me these people may have a different thing going on. There is also a high degree of misdiagnosis because, especiyally in the UK i dont think people are diagnosed positively - its given as a throw away remark if they cant find anyhting wrong with you and you manage not to show too many pyschiatric symptoms to get labeled 'depressive'
Then there is the POTSY group - isee the problems they have as being very different to mine - i am far more of an immune type and i also dont have the classic fibro style widespread pain - i get the terrible flu like aches, joint pains and like you the eye things, which comes and goes, but luckily pain does not rule my life.
I am actually doing much better now than i have for a number of years. I have many days where i can do a lot and function well - occasionally go for a short gentle swim or a bit of gardening - b ut i cant keep doing these things day in day out or a crash comes - i try not to push myself to crashing point, but i also want what life i can, when i can. I no longer have the extreme anxiety i had, but new things always surface - my lung is buggered from the repeated infections and i had pneumonia again this autumn. My joints in fingers on one hand are swollen - ESR is now high and am anemic with gastritis. Since mid september have had two colds, three stomach bug, flu and pneumonia - happy days!
I agree with Heaps EIB - a good moniker for what goes on with us.
Now my post has rambled on AND gone off topic - apologies.
Dont apologies Justy its me that swings off topic, apologies to all, i know i always do it. your just talking with me. My first intention was to reply about the recovery rates of men versus women. But i always drift, as i guess i dont talk to anyone about many things. so it seems to happen easily to me on here. apologies to all again.
Sounds like youve had a bad rough ride since september Justy. Damm i dont know how you coped with all that. Ive had a bad cold and the abcess surgary. But flu and pneumonia is another thing intirely. flu can kill, especially in already weak people. So you must have had a really bad time. well done for pulling yourself through that. You must have very good inner strength. As well as being a lovely person.
Good to hear about your slight improvements, thats so good news. thats how i started getting better, just as you describe. Though the doing too much and crashing, can go on for years. pace pace pace is the key, i know tyou know this already. I so hope the snakes and ladders recovery, so swings more and more in your favour. you know i belive in high quality diet. ( mainly many many salad veg ) vits and high strenght vit c seemed to help i think ? but was hard to determine. but was certainly doing those things. plus good sleep every day ( a side effect of the medication i was on amitriptylene ) the good sleep everyday. diet and suppliments, and good pacing. over time built up more and more.
it has to be built on, doesnt it. But you can pull away from it Justy i believe you can. Sounds to me like its already happening with you. Do anything and everything you can to allow this to grow. you deserve to be free of this. As does everyone who suffers. Thanks justy. i found you comments about what i see happening on here interesting. something that i will have to think about. As even you seem uncertain about some of it, ( who isnt ? ) But its important to understand a lot of this i think. Especially the mis diagnosis
Don't forget to watch episode 38 (part 1 of the 2 videos), also with Dr Chia:
Also, all the "ME/CFS Alert" episodes are listed, and available to watch, here:
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