In spite of adverse health at moment, I am unable to rest.
I have so many technical flaws to report from the little that I heard from the "experts" last Friday, that I am flooded with rebuttals to make, but have no capability to put on paper as I write this.
I meekly substitute a second impression of that charade which I convey because there is an active attempt by medicine to undermine our legacy as sufferers from an unknown disease entity - one that has erroneously been named FND.
IMPRESSION:
The opening remarks included the following phrase about the disease called "FND" :
" We are at the interface between psychiatry and neurology."
Folks, it took me all day to fathom the utter disregard this phrase had for our community of sufferers. I was in shock.
THERE IS NO SCIENCE THAT I KNOW OF THAT CAN SUPPORT THIS STATEMENT. NONE... ZERO ... ZILCH !
The phrase is an assumption by medicine that ALL sufferers of the broad spectrum symptomatic presentation, that is ever expanding with each new patient, will demonstrate an unequivocal link between their neurologic deficits and some preceding psychological manifestation.
Outraged but still in shock.
From there, the conference gleefully proceeded to build upon that premise by making assumption after assumption that resulted in a tower of playing cards all resting on the joker in the deck. Folks, we are being played as that joker.
I never did recover from that remark.
I am being dramatic today. Excuse me for that. I am haunted by the vision that my family and I are fixing to get erased from the historical medical record because medicine has made a convenient truth. It is a legacy issue for me.
I leave that thought for you to respectfully consider.
In closing this post, a remembrance of my father:
At the dinner table daddy always said -
"Son, if you just want a bite, then take only a small piece.
But, if you put the whole pie on your plate, I'm gonna make
you eat it all."
What happened last Friday, is they did just that. And now, they only want to deal with that sliver of pie that they feel they can manage. The rest of the pie will get discarded if we don't do something to protect our legacy.
Firstly, you are to be commended for having made the considerable effort to attend the conference in the first place. Even more so when considering your current health, and then to continue to update us with your experience in spite of this. It is obvious that it was not a pleasant experience. I am sorry you have had to bear the considerable dismay this has brought you, but I am truly inspired that, despite this, you continue to think of others (us) with fortitude and your dignity intact.
Unfortunately, it appears the conference has confirmed an international consensus that the medical profession has no clue what they're dealing with, but continue to fumble their way through the process with little learned from the patients they undermine in their haste to make the broad spectrum of our ailments conform to the box they wish to shelve us in.
I am in Scotland and have been having these very 'debates' with the medical professionals here since I was diagnosed last year. The neuropsychologist at the rehab centre in the hospital actually told me that "never in her career had she had a patient with whom she had had to debate so much with" ...she hated me as she never did 'win' one of these 'debates'.
The most frustrating thing about the whole charade for me is that I was very willing, and 'excited' (for lack of a better word at 6.30am), to be a part of the ongoing research in the arduous journey of medical advancement until I experienced the dismissal and ignorance of so-called 'professionals' who 'had to deal with' another 'nutcase' ...grrrrr!!!
It gives me strength (very selfishly) to know that I am not alone in that endeavour and that there are people like you out there who are fighting with me.
Garner your strength, take the time to recover and heal from the insult, and know that there are people around the world who do understand and continue to fight by your side.
We know our own bodies and collectively, we are a vast resource of support, information, strength, courage, and resilience with which we can bolster each other and continue to fight.
I hope you feel better soon. Don't give the conference the validation by allowing it to bring you distress. Our individual journeys are difficult, and will continue to be, but know that we are laying the foundations for future patients so that they won't have to suffer the indignities that we currently do. That in itself is something to be extremely proud of.
Thank you for your well wishes. It is 6:30 a.m. in Seattle and I can smell the coffee just brewed but have yet to pour a cup so bear with me. I loved what you wrote in your post. It sounds like you fared better in your interactions with medicine than I did.
You so deftly describe not only where we have all come from in our journeys to this point, but where we also find ourselves at this very moment. We are fighting for the future. Thank you for clearing my head again.
Vikki, you and folks in this community have far greater intellect and a stronger command of environment than I do. When outside the conference room in Atlanta, I would periodically stand towards the center of the lobby and stare, just begging with my eyes for one of those doctors to come near. I wanted a downeybrook. I really wanted to get into it and I am a lifelong pacifist.
I have no tolerance left to debate. I am down to facts and facts are on our side. I am going to have to write to the players at Emory U. and tell them the facts. I have always been a much better defensive player but now I have to play offense. We will see how that goes.
What interests me though is the relative silence that I feel exists from the research community on the subject. I believe there is a Paul Allen Institute for Brain Science and an Institute for Cell Science here in Seattle. I know the Gates Foundation is here as this is a global health issue. Maybe, it is time to ask for a conversation. I strongly believe this is a problem involving cellular and molecular mechanics with possible genetic material vulnerability. It is science that we need to get involved. The amount of known suffering is staggering and we have not even addressed how much more is out there.
I want to say it. There is such a difference between the brain as an organ and the conscious mind. Would doctors be so quick to blame a disease on our soul as they do our mind? They can not run tests on our soul. We have got to get this issue out of psychiatry. We have to pitch that bag off of our backs. We carry too much baggage as it is now.
I thank you again for writing such a caring, thoughtful and purposeful letter. Your encouragement for renewal really helps.
Sun is now up over mountains. Please keep writing.
Epigenetics. One of the keys to much of the recent research into ME that is making great bounds. It's what is helping them find bio markers. Yet to be announced what those bio markers are but they are in the pipeline (fingers crossed).
I must admit I often wonder given that FND, Fibromyalgia, ME, thryroid issues and so many other conditions share so many similar symptoms, will they turn out to have similar causes. In other words originate from the same problems.
The body is one huge and extremely complex perpetual cycle and I guess it just depends on where in the cycle the problem lies. But given that many of these conditions seem to involve endochrine, limbic, neurological, digestive and immune issues could research into one of these conditions have knock on effects for others.
I could be talking rubbish as I'm not a scientist, just a frustrated patient desperate for answers . . . but I do believe the research in ME at least has kicked up a pace so who knows what the future holds for us.
I forgot to add one thing to my reply. I understand Emory U. Is hosting an annual conference on FND under a ten year grant program. I believe this was the second year of hosting this event but I am not sure. In any case, I have to stop that madness before it spreads any further.
Thank you so much and we remain in this fight together. I have my second appointment with Jon stone and I am part of their clinical trial in Edinburgh so will keep you posted. Sending you lots of hugs 🤗
Ailsa. Thank you from bottom of my heart. And thank you for continuing the tough road of participating in clinical trials. We never know where the breakthrough will occur so we support you in your efforts on that front. We attack this every way we can.
You have had an excellent reply from ViktoriaC which I can only endorse completely. Erudite and hit the nail on the head with every point.
So I will just repeat the most important point at this stage. Thank you, thank you, thank you for all your stirling efforts in doing this important thing for the rest of us.
As Viktoria says, stay strong, and rest assured we are right behind you.
And don't forget to think of yourself and rest up. Gentle hugs, Margaret. xxx
You are another anchor of intellect and resource in this community. Please accept my continued respect and gratitude for your insightful contributions. One day, I hope to stand on a patio terrace in warm sunshine in the UK and meet, talk and listen with all of you. I will never relinquish that possibility to be together.
Vikki gets it. You get it. This community gets it. I am trying...
I have to probe around here in the USA and try to step on toes. Better yet, I'll take a branding iron with me. That should burn some feathers. My health is what it is. As long as my brain holds out, I will give it a go. The wheels on the walker need more wear.
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