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Jen Brea and Senator Ed Markey Brief US Congress Members

slysaint

slysaint

Senior Member
Messages
2,125
Agree, very good intro. @znahle brilliant. Anyone fancy doing a transcript of his section?

eta:
briefly this is what he said:

Among the mysterious illnesses ME/CFS is one of the most challenging.

We only know a little bit about the epidemiology.
It affects more women than men.
25% of patients become housebound or bedbound.
91% of patients are undiagnosed.

Some of the challenges:
Misinformation and antagonism.
Insufficient funding for research.
Several diagnostic criteria making it difficult to compare studies and data with fidelity.
Lack of FDA approved drugs.
Lack of Pharma investment.
Insurance and ICD coding debacles.
No feasible biomarkers.
Poor grasp of the history and minimal patient support.
The Cardinal problem is the severe knowledge gap:

Slide of graphs showing Autism, MS, Alzheimers research progression curves……….in ME/CFS the line is flat.

Myths that exist:
1) ‘Your blood tests came back normal’
Well, what you measured in my blood came back normal.
Show slides of data from ME/CFS patients blood samples compared to healthy controls:
There are hundreds of factors in blood that are very different between the two.
2)’You look normal’
Quality of life study rank on the lowest score in terms of QoL.

3)It’s caused by depression or anxiety.
Maybe it comes as a secondary but is not the primary cause.
Look at the evidence; as a scientist if you look, if there is one disease that is screaming out that it is not one of depression it is this one;
We have increased cortisol levels in anxiety and depression, in ME we have a reduction.
Enlarged adrenal glands in a/d in ME a reduction
We have reduced seratonin with depression, here [ME] we have an increase in seratonin levels.
We have lack of motivation[a and D], here we have lack of energy not motivation.
Exercise improves depression, exercise can lead to a crash and PEM in ME.

There is all kind of factual data that debunk all these myths.

But things on the research front are improving.
Lists what has been happening over the last two years.

Why we are in this predicament:
This is a disease where it has traditionally been defined by symptoms not by bio-markers. And the question is are there underlying objective abnormalities.
As shown in the Myths section we have numerous objective abnormalities.
Very serious defect in four major categories:
Bioenergetics, Neuro-endocrine system, immunology and microbiome

This is not only a disease that is rooted in biological and physiological abnormality,
It is a very complex disease, that is rooted across different fields of medicine and biomedicine.

ME/CFS iceberg:
It is there, it is deep, we only know what’s above the surface, and there is a lot of work yet to be done.

Science and Policies paradigm:
Eg poor quality research, maladapted policies, poor investment in science and technology, inability to retain talent, profit driven private sector investment, misinformation.
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