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IOM & SEID - Jen Brea, Dr Ellen Clayton, Dr Enlander on NPR phone-in 10am Mon 16 Feb

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Valentijn

Senior Member
Messages
15,786
Enlander: This is an immune system dysfunction. His clinic was funded by a patient, and it's abysmal that the government doesn't fund clinics. Treatment is kutapressin injections once per week and other immune system regulators. Talking about various viruses which are potential culprits.

Host: Is there a cure?

Enlander: Some patients are helped with anti-virals, but some are not. The illness has multiple facets, as a multi-systemic disease. It might be governed by the immune system dysfunction. Yes, exercise is good, but over-exercise is bad

And now another break.
 
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Valentijn

Senior Member
Messages
15,786
Host: Should more money be spent researching the cause and cures of this disease?

Brea, Enlander, and Neides are still on the air. And now a clip from Laura Hillebrand: I was unable to leave the house a single time for two years. But I kept working every day to get it done.

Host to Neides: NY Times says 20 different definitions have been developed. Is it possibly various conditions?

Neides: I agree. Possibly a multitude. But rather than focusing on underlying cause, we should offer them the hope that we can help them get better, off of disability, and back to the life they want to live. They can measure systemic inflammation. Will look at CRP, homocysteine, glucose levels to see if immune system is in overdrive. Approach is to quiet the immune system so it can keep us healthy. We need to focus on the microbiome - we eat a poor diet. Diet isn't completely attributable to CFS, but that proper diet can quiet the immune system. QUACK QUACK. QUACK QUACK. :rolleyes:
 
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Valentijn

Senior Member
Messages
15,786
Kira from Sarasota: CFS for 21 years, diagnosed in 1994. Lost everything, hasn't been able to work. Was very athletic. Only precursors were stress and a tick bite with bulls-eye rash. Did a couple rounds of antibiotics. First two rounds resolved symptoms, but they came back and the third round didn't help. Rests so she can go to the store to get food.

Enlander: Kira's story is not unique, and many have suffered for decades. Doctors will say nothing is wrong because "the normal blood tests are normal". Specific tests not part of the normal work-up show the inflammation or immune dysfunction.

Host: Why is it hard for doctors to take this disease seriously?

Neides: Illness is based on subjective complaints, which makes it difficult to gain consensus. Similar to Fibromyalgia where you can't measure the problem. There's no blood test or brain scan that can show it, so doctors dismiss it. The system has failed Kira.

Host: People trained in medical schools aren't taught about CFS?

Enlander: It's a disease which is overlooked by most medical schools. Mt Sinai was one of the first to form a ME/CFS center.

Host: Are we doing enough to diagnose and treat this disease? NIH spends $5M per year, compared to $3B on HIV/AIDS. Are we doing enough.

Brea: We aren't doing enough. CFS is held to a higher standard. Other diseases don't have to have an understood cause. CFS isn't understood because it hasn't been invested in. We could make quick progress if there was a social and public recognition of how serious this disease is. People are living in dark rooms and can't tolerate sound or touch or light - that's solitary confinement, which is considered a form of torture. It's not surprising that there's such a high suicide rate - it's not due to depression, it's due to untreated pain.
 
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Valentijn

Senior Member
Messages
15,786
Sofia from Detroit: Three decades with FM and/or CFS. Was a tennis star, then unable to roll out of bed. Isolation, pain, dark place. Went to medical school, but didn't finish. In regards to what Neides said earlier: helps to be aware of the environment, not be exposed to wi-fi, cleansing the body, juice fasting. She thinks it has to due with toxicity in our bodies.
 
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Valentijn

Senior Member
Messages
15,786
Neides: We need more funding for research and physical psychological help needed from being debilitated and dismissed for so long.
 
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Valentijn

Senior Member
Messages
15,786
Some people remind me of good-natured and well-meaning puppies who haven't learned how to override their natural instincts. And like those puppies who are about to pee on the rug, these people need to be firmly told "NO" every time they're tempted to say anything good about exercise in the context of ME/SEID.
 
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SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
Worst portion of the show:

Valentijn said:
Neides: Talking about "chair yoga" offered at his clinic. Simple exercises just to get the patient moving. Working within the patients' current limitations. "It's baby steps." But basically describing GET.
Click to expand...

Major disappointment, Cleveland Clinic is a big deal in the US, much like the Mayo Clinic. He started off well but then ended with GET, ewww. However..........he does think it's a real somatic illness, so making progress there.


Best part of show (and Brea's passion made me tear up):

Valentijn said:
Brea: We aren't doing enough. CFS is held to a higher standard. Other diseases don't have to have an understood cause. CFS isn't understood because it hasn't been invested in. We could make quick progress if there was a social and public recognition of how serious this disease is. People are living in dark rooms and can't tolerate sound or touch or light - that's solitary confinement, which is considered a form of torture. It's not surprising that there's such a high suicide rate - it's not due to depression, it's due to untreated pain.
Click to expand...
 
GracieJ

GracieJ

Senior Member
Messages
773
Location
Utah
Is there a source for transcripts for the show?

Later. Found the answer, no transcript. A CD can be ordered, though.
 
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Valentijn

Senior Member
Messages
15,786
SpecialK82 said:
Major disappointment, Cleveland Clinic is a big deal in the US, much like the Mayo Clinic. He started off well but then ended with GET, ewww. However..........he does think it's a real somatic illness, so making progress there.
Click to expand...
Yes, he doesn't seem like a lost cause. Maybe someone just needs to whack him on the nose with rolled-up copies of the 2-day CPET studies, and the GET studies which have proven graded activity to be of no benefit.
 
GracieJ

GracieJ

Senior Member
Messages
773
Location
Utah
@Valentijn I sure hope so. I had just tuned in a minute or two before Dr. Neides brightly said the word exercise. :bang-head: It strikes me that it isn't exclusively an ME clinic. ??

I look forward to a more realistic view of movement as care only. Movement is good for any ill person. Nurses rotate patients on the air beds to prevent bedsores, which probably is the lowest level of movement. It most certainly is part of sick care. But this craziness of making physical movement such a big front-and-center focus just needs to end.
 
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SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
On the bright side, Dr. Enlander said that the IOM was good. (Can't remember his exact words). Did see him quoted somewhere that he didn't like the diagnostic criteria, I believe. I thought the whole show would be about the IOM and the new name but very glad that we didn't hear debate about it on air. The public doesn't understand enough about what SEID/ME/CFS is yet to understand our internal debates, and the show highlighted that we are SICK.
 
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