A short sad history of ME/CFS

mardatha

I got ME 8 years ago out of the blue, but my doc said I had GF antibodies in my blood and that ALL patients with ME had this. Then I thought back to about 15 years ago when I was really ill for many weeks. By the time I went to the doc I was getting much better - but ever after that, when I got colds etc, I was ill and flattened for 5-6 weeks, and the doc says now she thinks that was post-viral syndrome and that the GF was the trigger for my ME.
Hope that offers some clues and help x

clouty

Just coming in on the end of this thread - the National Archives say you can request the reason why the files are closed - has anyone done that? Could it just be that personal detail hare held in them? I've not gone into it in detail.

Yes, that is the reason they give for not releasing the files, however recently some of the files were opened, with personal information redacted. There are still forty files locked until 2071.

About what triggers ME: The theory is that 4 - 7% of the general population are carrying the gamma retrovirus XMRV. It is held under control (in latency) by the immune system until something - infectious illness, major life stress, injury, vaccination, or a combination - weakens the immune system sufficiently to allow the retro-virus to take hold. People then rarely recover. There are folk that have been ill for 40+ years.

People with ME are 25 times (not percent) more likely to get cancer. Interestingly, there are anecdotal reports of ME going into remission for ± 5 years after chemotherapy.

There have been several studies finding no (0%) XMRV in any of the subjects, controls or sick people. However no-one is denying that XMRV exists - there are electron microscope photos of it budding from cells, no-one is denying that it is present in aggressive prostate cancer - so the only conclusion that can truthfully be drawn from the negative studies is that they were using methods that could not find the retrovirus.

The next step, if the powers that be want to find a way to help the thousands of citizens to regain health, is to fund trials of the kind of treatments that work for people who are HIV+.

Fast tracked clinical trials of anti-retrovirals found the answer and a cure for AIDS. We need the same. Many of us are confined more completely than prisoners in jail. CCC ME is a life sentence, and we deserve treatment that works.

All the supplements (magnesium, B12, etc) just help prevent damage, they do not cure. It is important, until a cure is permitted, to support all the bodily systems with supplements (a way back I posted info from Nancy Klimas, a top ME doc) but it is just a holding action.

Clinical trials now!

NEH

clouty wrote: »

Yes, that is the reason they give for not releasing the files, however recently some of the files were opened, with personal information redacted. There are still forty files locked until 2071.

About what triggers ME: The theory is that 4 - 7% of the general population are carrying the gamma retrovirus XMRV. It is held under control (in latency) by the immune system until something - infectious illness, major life stress, injury or a combination - weakens the immune system sufficiently to allow the retro-virus to take hold. People then rarely recover. There are folk that have been ill for 40+ years.

People with ME are 25 times (not percent) more likely to get cancer. Interestingly, there are anecdotal reports of ME going into remission for ± 5 years after chemotherapy.

There have been several studies finding no (0%) XMRV in any of the subjects, controls or sick people. However no-one is denying that XMRV exists - there are electron microscope photos of it budding from cells, no-one is denying that it is present in aggressive prostate cancer - so the only conclusion that can truthfully be drawn from the negative studies is that they were using methods that could not find the retrovirus.

The next step, if the powers that be want to find a way to help the thousands of citizens to regain health, is to fund trials of the kind of treatments that work for people who are HIV+.

Fast tracked clinical trials of anti-retrovirals found the answer and a cure for AIDS. We need the same. Many of us are confined more completely than prisoners in jail. CCC ME is a life sentence, and we deserve treatment that works.

All the supplements (magnesium, B12, etc) just help prevent damage, they do not cure. It is important, until a cure is permitted, to support all the bodily systems with supplements (a way back I posted info from Nancy Klimas, a top ME doc) but it is just a holding action.

Clinical trials now!

Clouty can you provide this evidence that says that ME people are more likely to get cancer, i haven't heard that before.....


I think there are other treatments out there that are worth a shot such as the one I am having which do provide an alternative for some people to endless painkillers and anti-depressants.....The problem is mroe often thatn not to get them you have to go off book and sacrifice god knows what to find the money to pay for them....I wish the NHS was more forward thinking and willing to fund the trials but I know my specialist and the trust dealing with my treatement are campaigning the govenment to do so....

Mojisola

NEH wrote: »

Clouty can you provide this evidence that says that ME people are more likely to get cancer, i haven't heard that before.....

After 25 years of learning about ME, this is a new one to me, as well. I'd be interested in some more information.

NEH

Mojisola wrote: »

After 25 years of learning about ME, this is a new one to me, as well. I'd be interested in some more information.

I know in the the however many years i have been battling either ME or Fibro i have never heard this...i know when i had ME that i wouldn't have got a mortgage or anything as at that time there was no clinical data to say it wasn't life threatening but never did it mention that i was at a higher risk of cancer....

MrsManda

Thought this may be of interest to some people:

A List of Clinical Trials for ME/CFS - some are still recruiting

mardatha

I wonder if this cancer statistic is somethign to do with lack of movement or exercise ? it might be theoretical rather than factual?

clouty

Clouty can you provide this evidence that says that ME people are more likely to get cancer, i haven't heard that before.....

Hi NEH, it's a figure that I have read in an authoritative source, which eludes me atm. I'm on the hunt for it though, and this time I'll bookmark it! I've found it quoted in forums today, but without links, so that does not get you any further. Meanwhile, here is some more general information about ME/CFS and cancer

http://www.suite101.com/content/cfsme-and-cancer-risk-a226291

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Causes%20of%20Death%20-%20CFS%20Patients.pdf

I'll be back later...

NEH

clouty wrote: »

Hi NEH, it's a figure that I have read in an authoritative source, which eludes me atm. I'm on the hunt for it though, and this time I'll bookmark it! I've found it quoted in forums today, but without links, so that does not get you any further. Meanwhile, here is some more general information about ME/CFS and cancer

http://www.suite101.com/content/cfsme-and-cancer-risk-a226291

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Causes%20of%20Death%20-%20CFS%20Patients.pdf

I'll be back later...

You see this is the thing, they always say if you have anything that complcates matters that you're more at risk of cancer.....and then tehy tell you well if you put this in your diet do this do that then that can help prevent it, if you're on the pill then that'll help....Who the whatsit do you believe?!

I can understand why people who may have cancer as well may not get diagnosed too quickly and that would be the medical profession's fault for putting us off them for life!

mardatha

I just dont read stuff like this, there's no point for me. I try to take exercise when I can, I try to eat healthy when I can, and I STAY CHEERFUL WHATEVER HAPPENS! lol!