Research 1st
Severe ME, POTS & MCAS.
- Messages
- 768
There is no cure for ME, but within years there may be a biomarker and a treatment for a subset.
Realistically, this is for a subset not sick for too long, a 'cure' (for them) could be on the cards depending how you define cure of course....
Time is the problem here. Time spent ill. TIme spent inflamed, damaging your CNS, Lungs, Heart, Kidneys, Liver, Bones and Vasculature (Endothelial disease is a big killer). For example, Bartonella likes to infect endothelium, so we'll have to see how these elusive ME pathogens go on that front if you've lived with untreated Bartonella since 1990 and are still alive.
Basically speaking, if you have autoimmune disease for 5 years (caused by a pathogen infiltrating tissue that can be research with medicine), then yes, perhaps you'll get back most of what you had before sickness with a 'cure' (lets call it the 1st ever evidence based treatment).
But if you're sick 30, 50 years. Forget it. This sadly, is our reality. Or should I say, preventing us from having a life due to a conspiracy to silence the patients in the eyes of science, the media, and the public by basing their potentially fatal disease, on 'fatigue', using no objective measures. (Fukuda Criteria CFS to define 'ME' is a crime in itself), because it well known patients die from ME or CFS for decades, but not a single influential 'researcher' has the balls to stand up and point this out - except Dr Montoya. He is ignored, and the SEID and P2P remain as they are.
No scientist can reverse long term MS, Lupus, Diabetic damage and the same will go for 'ME'.
The deciding factor, in my opinion, will be if the pathogen in ME infects brain cells (nerve cells). It could well do, in which case, I'll be writing this with more than a spellchecker in another few years as will others who meet criteria for pre dementia, but aren't allowed a diagnosis due to political meddling.
If and when the 'cure' (misnomer) is revealed, the surviving PWME and PWCFS will see that politics is to blame, not doctors, ohh and some very very silly people who always new.
All it took was money, money pushed away by a ruse. The ruse of 'Chronic Fatigue' trying to hide non HIV-AIDS in children and adults who were never bitten by ticks (who have Lyme) and who never had sex (but have given 'CFS' to their family members = prions and pathogens from blood transfusion and horizontal infection).
The 'CFS' will he shown to be genetically transferable from mother to baby, hence cluster outbreaks but no pandemic, and hence the British ban on mothers umbilical cord blood if she has 'CFS'.
They always knew. That is the tragedy, and the genocidal act of limiting people's full potential, due to embarrassment of how this was all caused. Such a tragic waste:
So many good people - silenced. (Patients, Carers, Researchers on the side of 'ME' all along advocating for anti inflammatories, antivirals, antibacterials etc).
Vs
So many bad people in charge of 'CFS', given center stage to continue as if nothing ever happened back in the 1990's and no emergency exists as it's our fault we are ill (CBT, GE, Pacing, Antidepressants).
A cure for some then, will be a bitter pill to swallow for those excluded from the celebrations (people die). Too little, too late, if you're elderly with ME CFS and never had a life, and now the medications simply cannot treat the damage done.
We've seen it all before in science, and in history. Humans never learn. Greed and Power always determine who wins and who loses. The loss of religion in society and science = less guilt for committing evil acts = more ability to harm.
In a religion less society, mixed with capitalism and self adornment of the trappings of wealth (or in science by 'respect' by your peers), patients can go hang. And that is what happened to all of us, cure, or otherwise.
Maybe the people who can get better, can help sue the psychiatrists? Hopefully that will be one positive aspect of this dreadful situation.
Realistically, this is for a subset not sick for too long, a 'cure' (for them) could be on the cards depending how you define cure of course....
Time is the problem here. Time spent ill. TIme spent inflamed, damaging your CNS, Lungs, Heart, Kidneys, Liver, Bones and Vasculature (Endothelial disease is a big killer). For example, Bartonella likes to infect endothelium, so we'll have to see how these elusive ME pathogens go on that front if you've lived with untreated Bartonella since 1990 and are still alive.
Basically speaking, if you have autoimmune disease for 5 years (caused by a pathogen infiltrating tissue that can be research with medicine), then yes, perhaps you'll get back most of what you had before sickness with a 'cure' (lets call it the 1st ever evidence based treatment).
But if you're sick 30, 50 years. Forget it. This sadly, is our reality. Or should I say, preventing us from having a life due to a conspiracy to silence the patients in the eyes of science, the media, and the public by basing their potentially fatal disease, on 'fatigue', using no objective measures. (Fukuda Criteria CFS to define 'ME' is a crime in itself), because it well known patients die from ME or CFS for decades, but not a single influential 'researcher' has the balls to stand up and point this out - except Dr Montoya. He is ignored, and the SEID and P2P remain as they are.
No scientist can reverse long term MS, Lupus, Diabetic damage and the same will go for 'ME'.
The deciding factor, in my opinion, will be if the pathogen in ME infects brain cells (nerve cells). It could well do, in which case, I'll be writing this with more than a spellchecker in another few years as will others who meet criteria for pre dementia, but aren't allowed a diagnosis due to political meddling.
If and when the 'cure' (misnomer) is revealed, the surviving PWME and PWCFS will see that politics is to blame, not doctors, ohh and some very very silly people who always new.
All it took was money, money pushed away by a ruse. The ruse of 'Chronic Fatigue' trying to hide non HIV-AIDS in children and adults who were never bitten by ticks (who have Lyme) and who never had sex (but have given 'CFS' to their family members = prions and pathogens from blood transfusion and horizontal infection).
The 'CFS' will he shown to be genetically transferable from mother to baby, hence cluster outbreaks but no pandemic, and hence the British ban on mothers umbilical cord blood if she has 'CFS'.
They always knew. That is the tragedy, and the genocidal act of limiting people's full potential, due to embarrassment of how this was all caused. Such a tragic waste:
So many good people - silenced. (Patients, Carers, Researchers on the side of 'ME' all along advocating for anti inflammatories, antivirals, antibacterials etc).
Vs
So many bad people in charge of 'CFS', given center stage to continue as if nothing ever happened back in the 1990's and no emergency exists as it's our fault we are ill (CBT, GE, Pacing, Antidepressants).
A cure for some then, will be a bitter pill to swallow for those excluded from the celebrations (people die). Too little, too late, if you're elderly with ME CFS and never had a life, and now the medications simply cannot treat the damage done.
We've seen it all before in science, and in history. Humans never learn. Greed and Power always determine who wins and who loses. The loss of religion in society and science = less guilt for committing evil acts = more ability to harm.
In a religion less society, mixed with capitalism and self adornment of the trappings of wealth (or in science by 'respect' by your peers), patients can go hang. And that is what happened to all of us, cure, or otherwise.
Maybe the people who can get better, can help sue the psychiatrists? Hopefully that will be one positive aspect of this dreadful situation.