A short sad history of ME/CFS

vivatifosi

Out of interest, does anyone with ME or fibro have other ME or fibro sufferers in the family? I mention it because I have an aunt with fibro and her daughter has both fibro and ME, which appears to have been triggered by meningitis.

daska

vivatifosi wrote: »

Out of interest, does anyone with ME or fibro have other ME or fibro sufferers in the family? I mention it because I have an aunt with fibro and her daughter has both fibro and ME, which appears to have been triggered by meningitis.

Which just seems to prove how utterly impossible it is for any certainty where ME is concerned because...

I was in hospital with meningitis last month and since then have noticed substantial lessening of the symptoms of ME (triggered by shingles nearly 4 years ago). My twitches and tremors are virtually non-existent, the fatigue is less, my digestion is better, I can sit in the sun again... (though as my vision's been affected and I've added trigeminal neuralgia to the list of problems I can't claim a complete improvement in all areas LOL)

Is the improvement all down to having had a period of enforced bed rest? - I wasn't even allowed out to use the commode for part of it whereas at home I have a young child.

Trialia

vivatifosi wrote: »

Out of interest, does anyone with ME or fibro have other ME or fibro sufferers in the family? I mention it because I have an aunt with fibro and her daughter has both fibro and ME, which appears to have been triggered by meningitis.

I'm not actually sure. My cousin has chronic pain resulting from a spinal injury that seems more widespread, and fatigue, but he doesn't have a formal diagnosis. My father also has chronic pain, but the attribution is murky as he has HEDS (like me), osteoporosis and rheumatoid arthritis. So we're not really sure.

vivatifosi

daska wrote: »

Which just seems to prove how utterly impossible it is for any certainty where ME is concerned because...

I was in hospital with meningitis last month and since then have noticed substantial lessening of the symptoms of ME (triggered by shingles nearly 4 years ago).

Wow, that's amazing daska. My cousin nearly died from Meningitis, and was really unlucky to then get ME. Its good to hear though that it can also have the opposite effect. Hope you are recovering well from the meningitis. Cousin had meningococcal scepticemia variety (which I don't think I've spelt right but hopefully you get my drift).

mardatha

NEH, I'm in the Scottish Borders health board area, and treatment/management is non-existant. Years & years ago I was sent first to one consultant who told me, first sentence she spoke, "I dont believe in ME as an illness & I think we just need to get you some physio to get you moving again ". At the time I was working full time nights in a care home, and dead on my feet. If I'd had the energy I'd have jumped over her desk and throttled her .
Next I was sent to the Western in Edinburgh to a consultant in infectious diseases .......who took 2 hours to tell me I didnt have anythign infectious . And that has been IT. Now they roll their eyes and tell me their policy at the surgery is "self-management". When I say Oh in other words Mary get on with it yerself eh? - they look out of the window (while probably wishing I'd self-destruct in the chair)
What made me much better was the dreaded pacing that I'm still not good at after 7 -8 years. Plus strict avoidance of rubbish food, eating 3 meals a day even when I'm not hungry. Old-fashioned plain food, porridge,. home made soup, home grown veggies. My appetite isnt good but the husband makes me eat. I was doing fine until this past week when I knoew I was over doing things but didnt stop - and now I'm in the worst relapse I've had in years. But I will get back out of it I know.:)

NEH

vivatifosi wrote: »

Out of interest, does anyone with ME or fibro have other ME or fibro sufferers in the family? I mention it because I have an aunt with fibro and her daughter has both fibro and ME, which appears to have been triggered by meningitis.

In one support group I attended the mother had ME and 3 of her children, they have also now go on to develop other illnesses on top of their ME. I'm kinda hoping there isnb't a genetic link as that woud be a final nail in the coffin for having children.

mardatha wrote: »

NEH, I'm in the Scottish Borders health board area, and treatment/management is non-existant. Years & years ago I was sent first to one consultant who told me, first sentence she spoke, "I dont believe in ME as an illness & I think we just need to get you some physio to get you moving again ". At the time I was working full time nights in a care home, and dead on my feet. If I'd had the energy I'd have jumped over her desk and throttled her .
Next I was sent to the Western in Edinburgh to a consultant in infectious diseases .......who took 2 hours to tell me I didnt have anythign infectious . And that has been IT. Now they roll their eyes and tell me their policy at the surgery is "self-management". When I say Oh in other words Mary get on with it yerself eh? - they look out of the window (while probably wishing I'd self-destruct in the chair)
What made me much better was the dreaded pacing that I'm still not good at after 7 -8 years. Plus strict avoidance of rubbish food, eating 3 meals a day even when I'm not hungry. Old-fashioned plain food, porridge,. home made soup, home grown veggies. My appetite isnt good but the husband makes me eat. I was doing fine until this past week when I knoew I was over doing things but didnt stop - and now I'm in the worst relapse I've had in years. But I will get back out of it I know.:)

Well i moved the last 3 years so varied experiences. When i lived in Aberdeen i had the GP who said it was one of those illnesses which silly as it sounds came as a shock as my last two GP's before that had been more supportive (as much as they can be with having this illness) I never really saw him again after that as i felt it was a waste of both of our times....When i moved here last year my GP was happy to sign paperwork to the effect that I was in relapse but has never asked me how I was....So a couple of months ago i decided that as nobody has reviewed my Fibromyalgia for 5 years I would see a specialist given that my current relapse is ongoing for a year and a half, one of my longest for several years. Even when i went to get the letter from my GP he never asked what I was struggling with or why I wanted to see one...:eek:

So yes non-existent except for the basics... The specialist made a lot of sense though and now I am trying this medication to see if it eases things slightly...I jsut want to go back to my course and then after that go back to part time work, i miss it incredibly...

MrsManda

Mojisola wrote: »

Does this - www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure - explain the problem?

Thanks for this Reading the article as it was published in the IJCEM they don't seem to offer an explanation as what causes the mitochondrial dysfunction leading the symptoms of C.F.S. but do say that

in some cases there are severe deletions of genes in mitochondrial DNA (mtDNA), genes that are associated with bioenergy production.

The paper doesn't say so but in these cases I'd presume that the malfunction would be passed down the mother's line as mitochondrial DNA is passed directly from mother to child (unlike nuclear DNA which is a mix of the mother and father). Therefore if this dysfunction is a direct cause of CFS the condition will be inherited.

They also say in their conclusion that Mitochondrial dysfunction is also associated with several other diseases and that their study doesn't show whether the mitochondrial dysfunction is the primary effect (i.e. what causes CFS) or a secondary effect (i.e. as a result of something else).

So I guess in answer to my questions:
DNA damage occurs in some people with M.E./C.F.S. and in these cases if a woman has children the abnormal DNA will be passed to her children.

There is a correlation between the severity of the symptoms and the dysfunction of the mitochondria but it is as yet unknown whether the dysfunction causes the condition or the condition causes the dysfunction. And many conditions have cause a person to exhibit mitochondrial dysfunction so a person with CFS is likely to have mitochondrial dysfunction but a person with mitochondrial dysfunction may not have CFS.

As suggested by the authors, I hope a bigger lab takes these results and does a much larger scale trial to enable more to known and hopefully better treatment options to be developed. Thanks again for the article, it helped me alot.

clouty

This is my hypothesis of ME. It may be the reason for Fibro, too, and other as yet misunderstood diseases. We have to wait for good scientific research to prove or disprove it, but it is surely worth looking into seriously. However, the Medical Research Council here in England only funds psychological studies into ME, and the NHS only provides psychosocial treatments.

A recently evolved retrovirus, XMRV, which is sneaky and a bit of a wimp, is in 4 - 10% of the population. When someone's guard is down, due to infection, accident, abnormal stress or whatever, ones immune system can no longer keep it under control, and it replicates in nerve and brain tissue. It is hardly in the blood stream at all, which is why it is hard to find and treat. It is brought out of latency by hormone surges, stress, illness, other major life events, and once active can insert genes into our own cellular DNA. It has been found in greater than 30% of prostate cancer patients, and >67% of CCC ME patients.

People with CCC ME have damaged mitochondria, low Natural Killer cells, cytokines gone crazy and many other physical abnormalities.

Because the XMRV now has the upper hand, and has disregulated our immune system for its own ends, other viruses such as Herpes, Papilloma, etc, which most of us are carrying but keep under control, have a field day. We can no longer fight off bugs. XMRV may also be affecting the messages sent from the brain to the various bodily systems, making us ill without a cause that can be found in blood or urine.

Because we all have a different mix of viruses which change in dominance and effect, symptoms vary from person to person, and from time to time.

All we can do at present is support our various systems - digestive, heart, liver, brain etc - by good nutrition, extra helpings of nutrients, vitamins and minerals, antibiotics (though they have major drawbacks) and natural antivirals. Plus, support the immune system and the amygdala by having as much fun and laughter as we can, reducing stress, and trying Low Dose Naltrexone.

If this theory is correct, and research currently underway pans out, then we will be able to treat the root cause with antiretrovirals, such as have been developed for HIV/AIDs. Because this XMRV is a wimp, apparently recent research shows it to be far more susceptible to ART than the HIV retrovirus, and it is possible that after a year or two of such therapy, a person (me! you! all of us! please!) could be completely cured. With HIV people are on ART for life.

ART is pretty aggressive treatment, and not all types suit all people. It really needs to be prescribed by a doctor, who takes a strong interest in the progress of the patient. However, some of our sickest feel they have nothing to loose, and have started various forms of ART, and I am reading their reports with interest. Jaimie Deckoff-Jones is a doctor herself - here's a link to the blog http://treatingxmrv.blogspot.com/201...al-report.html


Here's a couple of short videos to explain further the why of this situation

www.youtube.com/watch?v=rpgYTsCtcYw&feature=player_emb

www.youtube.com/watch?v=y7VdXX9P58w

In case anyone doubts the importance of finding the truth about ME, here's the story of Sophia Mirza

en.wikipedia.org/wiki/Sophia_Mirza

mardatha

thanks clouty thats very interesting x

clouty

Nevada Newsline interviews Mike Hillerby from the WPI.
I just wanted to share this podcast with people. It's from a Nevada radio station, the Vice-President of the WPI bringin us up to date with what's happening in testing and treatment of CCC ME