Joint 'Honorable Research and Charities' and 'Autopsies' June 2013

Honorable M.E. Research, and Privately Funded Autopsies.

Alison/tink; Apologies it's been a while since a non-shout out or occasion based full blog post.

Fyi- We have a cute little discussion about the role things like Tattoos and Hair dye can play in the lives of people who have M.E., or who are ill coming in the next few weeks. So keep our eyes out!

As for this post, Yet again, this is something I am passionate about. Something that our readers and the world, need to be made vividly clear of.

I have read such a lot recently about the importance of M.E. research.

Yes, I feel it is vital, especially for realistic treatments etc. And yes there are some false charities who do justifiable tests actually relating to M.E.. To quantify 'some' I refer in one case to MERUK. I have been receiving their brochures for some 10 years now, at first because I was uninformed due to ill health in regards of the difference between M.E. and Cfs, and then once I did know the very real difference, I kept receiving them to keep up to date on what rubbish they spew. In these 10 or so years, I have  probably literally only seen 3 or 4 possibly M.E. specific investigations which is ridiculously paltry don't you think. The only place in the world that I trust at all in regards to research is Doctor Hyde's Nightingale Foundation.
What does it come to when there is only one facility in the world where an illness is legitimately researched when there are hundreds of thousands of sufferers- I have no words for how shameful I find that!

Back on point,

However, with regards to all other research charities, foundations, or such, as far as I am aware, not only is most of the research performed not applicable to M.E.., but all of their  professed 'M.E. research' is carried out on participants who qualify under their test rules as M.E. /Cfs sufferers.

Not only are all of the results therefore utterly useless, but they are so very incredibly harmful to M.E. sufferers.

M.E./Cfs does not exist. Therefore any results can not ever be applied to M.E. sufferers. When it is, M.E. sufferers are treated very incorrectly and inappropriately.

For example, two who would mostly otherwise seem signing beacons of hope in the world of M.E. Research are 'M.E. Research UK' (MERUK), previously known as Merge, and 'Invest In M.E. ' (IIME) and their sister charity 'Let's Do It For M.E.'

But as I explained, the very simple fact that to them their participants must qualify as what they call M.E./Cfs, means all of their results are not only useless, but incredibly harmful.

If a group did tests on a cancer patient, someone with an ingrowing toenail, someone with a broken leg, and someone with parkinsons, would they expect the results only to be pertinent to cancer patients- no no no.

So why does anyone think testing patients with M.E. and people misdiagnosed as Cfs will get results pertinent only to M.E. patients?

I understand people who say navigating M.E. 'stuff' needs a medical degree or an able brain, but this is so simple. Anyone, unless going through severely thought impaired M.E. times, must understand that!

The only research ever applicable to M.E. sufferers is the research carried out on M.E. sufferers only.

Therefore, please do not fund anywhere who believe in and define M.E. as M.E./Cfs, or believe in subgroups etc.

You are not only wasting your valuable money, but harming patients worldwide. I am not meaning to sound harsh, but simply trying to protect very vulnerable people.

Also something very important, is one form of research in particular.

Here in the UK, when most people die, a state funded autopsy takes place. These are quite generic and lets face it, most doctors, including the pathologists who carry out the autopsies, do not know didly squat about M.E., let alone what physical traits to look for or what tests to proceed with.

Therefore, many people who die from M.E., or as a result of complications from M.E., do not have M.E. as their cause of death, which they and their families deserve, as well as these results creating accurate statistically of course.

However, they also played an incredibly important role in the history of M.E.  because most of the research found at the very beginning about M.E. came from autopsies. It was then that wonderful people like Hyde and Dowsett carried out masses of patient based research.

Although there is so much known about M.E.,  I still feel even more research needs to be done on this illness, in the same way that there is huge amounts known about cancer but until not only treatments and cures, but prevention is found, we do not know enough. I feel the same applies to M.E. research.

But the reason I feel autopsys are important, is because for most of us, we are too ill to go and have tests performed on us to contribute to the research. And so to feel useful in this field, we can leave instructions for a private funded autopsy to be carried out.

To make sure this happens, I suggest two actions, both of which I myself have taken.
Firstly, I have it specifically written in my Prenate, (A document specifying your wishes for proceedings after your death. I.e., whether you wish to be buried or cremated, what type of funeral or service you would like, what music should be played etc etc.)
I also have told my father, who is my next of kin and my carer. This is because it will be he who tells the authorities of my death, and he who says what happens forthwith. This is important because otherwise, knowing him, by the time he would actually read my Prenate and Will, it would probably be too late for a private autopsy!

I have also specified some of my money to pay for the private autopsy. They are not cheap, but I feel it is incredibly valuable for future generations to not have to go through the mistreatments that we have had to endure due to both lack of knowledge and misinformation about this terrible disease that is M.E..

During writing this I have also had the idea that I might find a private coroner in advance, one who is willing for me to teach them about M.E. via Jodi and Hyde's books, so that the autopsy they do on me will be even more appropriate.
But as I said, I have only just thought of this idea so it's not in place yet.

We hope this entry has been helpful to you all.
And as always, please feel free to share widely. It helps people learn the facts, which in turn helps stop the seemingly never ending mistreatment of people with M.E..

Best Wishes, Much Love and Blessings
The Tinkerbelle and Hummingbird M.E. Blog x x