Ember
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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!
Justy.
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!
Justy.
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.”Looking forward to more snippets from Dr Chia - shame the nuggets are so small!
.. 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..
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and its second copy of the gene thats silenced, not always the chromosome - my knowledge on this is a decade out of date.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.
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.
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.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.
Justy x