Success on the Coimbra Protocol
Recently I wrote a post titled “The Coimbra Protocol doesn’t help everyone. Most, but not everyone” to raise awareness to the fact that this treatment, like any other, cannot and will not help everyone. I wish it would be different…but is not. It is a sad and disappointing truth.
What I learned from the discussion it sparked, though, was that people have different definitions of what “success” in this context means. That is what I want to address today.
Let’s face it: to put it very mildly, autoimmunity sucks .
It carries a weight second only to a small number of diseases. Even though each disease and subtype will bring different problems, challenges and concerns, the diagnosis of an autoimmune disease is the first stop of a long and winding life-long journey of battle against it.
As a group, they are chronic diseases without cure that get worse year after year unrelentingly. These are the expectations of a diagnosis like multiple sclerosis, rheumatoid arthritis or vitiligo.
So, in these circumstances, what can be considered “success"? When what is expected doesn’t happen.
When the progression of a disease like MS is halted and the clinical situation doesn’t get worse, it means something changed and what was causing the worsening isn’t apparently there anymore.
When fatigue is improved and tolerance to heat gets higher, it points to a shift in the undergoing process as both symptoms are linked with active systemic inflammation.
That is what success should be considered: when there is evidence that autoimmunity is not active and the natural path of the disease was altered.
To make myself as clear as I can be, let me give you a couple of examples.
a man with SPMS for 4 years started the CP with a very limited ability to walk, reporting just 100m. At the 6 month mark nothing changed. At the 12 month mark the walking got an improvement to reported 150m which should have been considered a success already since walking was getting better by 50%. Not that much real difference though. But after being on the CP for two years, his walking ability went to a mind-blowing 20+ km as he was able to hike with his mates with limitations. This is as successful as any treatment can be.
a woman with PPMS for 20 years started the CP with slow but progressive symptoms worsening year after year, with significant fatigue, numbness on her legs from the knees down, using a wheelchair on a daily basis and could stand for 30 seconds. After 12 months she reported improvements in the fatigue without any other symptom improvement. After three years in the CP she reported that numbness regressed to just below the ankles and she could stand for 3 minutes. What an achievement!
Are these very different stories? Yes.
Are they successful stories? Yes
Should they be considered success cases? Without any question
The second is as successful as the first one as both were able to change the course of the disease and experience clinical gains and improvements.
Both mean the natural path of the disease was changed, the active attack was stopped and improvements were made.
In both, the unexpected happened.
Success should not be measured by how much the symptoms improved but rather if there autoimmunity burden and activity improved, measured by symptom or analytical change.
There should be no such thing as “my symptoms only improved slightly and not as much as other people so I am not experiencing success”. The simple fact that symptoms improved by 5% means the treatment is making a positive impact which is not expected to happen.
Those small gains, those 1%, 2% or 5% are not minor accomplishments. In fact, they should be seen as huge wins because that’s what they are!!! Would be better to have 100% improvements? Obvisouly, that is indisputable. I deeply wish that could and would be the case for everyone.
But it cannot and must not prevent the celebration of all the wins.
Every team I know celebrates every goal in every game they play even though their main goal is the championship win.
If the underdog scores a goal against a much bigger and better team, they will celebrate like crazy, even if they end up not wining the game or the league. They were successful as the unexpected happened. That small win, that small 1% they celebrate that will fuel their journey.
In the fight against autoimmunity, any positive change not matter how big it is should be considered a win and should be considered a sign of success.
Then there is a whole different discussion on when success should be assessed. Let me know if it is something you would want to know my thoughts on.