Welcome! This blog contains research, information on lifestyle, nutrition, dietary supplements and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 15 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Friday, May 24, 2013

History, Hysteria and Hope

October 2016---Dr. Steven Novella, a neurologist and self-proclaimed skeptic, has published a recent blog post meant to discredit any and all past, present and future CCSVI research or treatments. Many of you have seen this post, and are rightfully angered. I will not link his post, as it contains one-sided, cherry-picked studies, full of opinion, and incompletely sourced. I also will not comment on his blog, as I believe continued scientific study will prove him wrong. The complete list of studies (which do have a variety of outcomes) is here: http://ccsvi.org/index.php/component/search/index.php…

Novella disregards science which does not fit into his narrative, and he speaks as though this scientific pursuit is over after only 8 years, even though the placebo-controlled CCSVI treatment trials are on going (Alfred Hospital and Brave Dreams) and we are just learning about deposition of plasmic particles and microbleeds initiating MS lesions (The Gladstone Institute, Ge/Haacke 7T MRI studies) and the brain's lymphatic cleansing process via venous pathways (Nedergaard Lab and Kipnis Lab). The #HeartBrainConnection is real, the brain relies on venous drainage, and the science is ongoing. To exclude vascular and lymphatic specialists from MS research is the greatest hubris. (I'd also remind readers that Dr. Michal Schwartz was also told to "throw out her research" when she contended that the brain's immune cells were protective. And she was right, too. Glad she didn't listen to male neurologists, either!)
My contention is that Novella's ilk have historical context. They come from Charcot's lineage. Neurologists delight in telling patients and other scientists that they are know-nothings and doomed without them, as only neurology understands brain science. Vasculature? Who cares, that's a plumber's expertise. It's the complex neurons which hold the key. Patients know nothing about their own bodies.  They are highly suggestible, uneducated and prone to follow fads.

Here's more on the history of Charcot, his ego,  his scientifically unproven treatment for MS, and his intellectual heir, Dr. Steven Novella, written in 2013.  The hubris continues.  Joan  


May 24, 2013
  
In the last two years, the paradigm for treating MS has changed.  Vitamin D supplementation is routinely recommended.  A healthy diet and exercise are encouraged.  Stress reduction and lifestyle changes, like smoking cessation, are encouraged.  

We are seeing a subtle shift in the understanding of MS as a purely autoimmune disease which cannot be modified, to an inflammatory disease which can be addressed with lifestyle changes encouraging cardiovascular health.

This is new.  

We also now understand that the changes which happen to the brain early in the MS disease process create pain, depression and fatigue.  These are not imagined symptoms.  They are real, and linked to atrophy of the hippocampus and thalamus.

Here is some more background about how MS has been viewed and treated throughout history.
You will see, the shift in how neurology considers MS is still evolving.
We're getting there.

The history of MS research is full of assumptions that were once held as fact by neurologists, but were later proven untrue.  It's important to review how multiple sclerosis patients have been described over the course of history, in order to understand the current mindset of neurology.  I hope this opens some eyes.   

Each of these three points were once believed to be factual.  We now know they were wrong, dead wrong. 
But the repercussions of these inaccurate beliefs linger today.

1. MS is related to the patient's psychological condition.

The very beginnings of MS research were dominated by French neurologist Charcot's fascination with hysteria and personality disorders as related to neurological disease.

Hysteria, from the ancient Greek word for uterus, was a nervous illness long associated exclusively with women. Symptoms differed from patient to patient and from one historical period to another, but they always involved both the body and the mind. Some characteristic symptoms included shortness of breath, heaviness in the abdomen, muscular spasms and fainting. Anxiety, irritability and embarrassing or unusual behaviour were also noted.

Hysteria received intense attention during the late 1800s. The French neurologist Jean-Martin Charcot proposed hysteria was an inherited nerve disease, similar to multiple sclerosis...Charcot investigated hysteria using hypnosis. In lectures he invoked characteristic symptoms in male and female hysterics by applying pressure to specific spots on the hypnotised patient’s body. Critics argued these performances testified to Charcot’s powerful influence over his patients, not the nature of hysteria.

This subtle message, which began as an understanding of MS as a disease involving the psyche,  was that MS was somehow initiated by a personality or nervous disorder which could be controlled by the neurologist.  This subtext continued on into the 20th century.  Here is research from the 1950s.

"The personality characteristics associated with multiple sclerosis as revealed by the MMPI profiles are presented and discussed. The personality characteristics revealed are: a reaction of depression, preoccupation and concern about bodily functions, feelings of hopelessness and insecurity, as well as tendencies toward indecisiveness, narrowness of interests, and introversion. Difficulty in accepting the disease, and its progressive limitations, as well as ambivalence and insecurity concerning the future, are often reflected in relatively poor emotional control and social adjustment."

2. MS does not cause fatigue.  

In the 20th century it was believed that fatigue was not a symptom of MS.  It was believed that fatigue was what caused MS.

Patients were told to stop exercising and to rest in order to avoid relapses.  The underlying message, again, was that there was a personality type that developed MS--neurotic, stressful, type A personality--hysterics. The message was that if patients could just rest, take it easy, not worry;  they could avoid relapses and disease progression.  This has been proven untrue.  Many different people develop MS: from athletes to academics, from mothers to rock stars, from children to middle aged adults.   And stress and rest are not part of the equation in contracting the disease.  And fatigue is often the presenting symptom before an official MS diagnosis as we learned this week.  And those who are able to exercise do better with symptom management.

3. MS does not cause pain

 When most people think of multiple sclerosis, they think of a disease that causes symptoms of weakness and motor problems -- not pain.
"About 10 or 20 years ago, there was a saying that MS causes all kinds of trouble but doesn't cause pain, which really isn't true," says Francois Bethoux, MD, director of rehabilitation services at the Mellen Center for Multiple Sclerosis Treatment and Research at The Cleveland Clinic.

As many with MS can tell you---they feel pain.  Their pain is real, and it is caused by their MS.  Even though patients have been describing their pain to their doctors for over a hundred years, it is only in the last 10 years that this has been taken seriously.
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I believe that the distance between the multiple sclerosis patient and the neurologist was allowed to persist through the historical characterization of the MS patient as hysteric, emotionally labile, neurotic or mentally unbalanced.  These false depictions were created by a group of doctors who were threatened by their own personal lack of understanding of the disease and inability to change its course.    It was too difficult to confront the ravages of MS and not be able to cure the disease.  It was easier to portray the patient as defective and the source of their malady.   This provided a comfortable distance between doctor and patient.

Neurology so distanced itself from the patient, that THEY DIDN'T EVEN BELIEVE THE MS PATIENT WAS IN ACTUAL PAIN.  It took over one hundred years for neurologists to admit that there might be pain, or fatigue, or depression caused by multiple sclerosis.  This is absurd.

Since the advent of MRI technology, doctors have concrete evidence of the degredation of gray matter, atrophy of the hippocampus, and demyelination in areas of the brain responsible for emotion, pain and cognition.  All of these changes to the brain are linked to depression, pain and fatigue.  
http://ccsviinms.blogspot.com/2010/07/study-on-brain-changes-in-ms-and.html

These changes to the brain occur early in MS.  Researchers can see the slowed blood flow and hypoperfusion.  They can study fMRI images. 7Tesla imaging (Ge, et al) has allowed researchers to see the microscopic vascular changes that happen to the veins in the MS brain. 
http://ccsviinms.blogspot.com/2009/12/hypoperfusion-decreased-blood-flow-in.html

The physical changes to the brain are caused by a disease process.  They are not psychological or imagined.   The disease comes first, and the brain damage follows.

If there are any young neurologists reading this, I implore you, bridge the gap between patient and doctor.
Look at your patients as family members, friends, siblings, loved ones, human beings. 
Study their MRI images, work with vascular doctors and look at their cerebral blood flow, specifically, the venous return.  Don't be afraid of collaboration between disciplines.  For this is the future of medicine.

Talk to your patients, but most importantly, listen to them.  When they tell you they are in pain, or exhausted or depressed--believe them.  Try to help them.  And try to learn WHY this is happening.

It's time to say goodbye to the era of Charcot and hysteria.  It's time for science.
Joan


Charcot demonstrating hypnosis on an "hysterical" Salpêtrière patient, "Blanche" 
A painting by Pierre Brouillet

3 comments:

  1. Thank you Joan. Thank you for keeping us informed and enlightened.

    Not to change the subject, but last night, I watched a documentary on "Netflix" called "Food Matters." The documentary also touched base on Vitamins and Supplements, and their role in the maintenance and restoration of Health.

    Earlier tonight, I found myself at "Vitamin Shoppe" picking up some supplements. I bought:

    1. Niacin (B-3), Spirulina,
    2. L-Carnosine, Noni,
    3. Acai Splash,
    4. Iodine,
    5. Potassium Iodide, and
    6. Bee Pollen.

    I'm planning to take the Supplements and follow the daily recommend count. Being Diagnosed with MS, should I avoid any of these Supplements?

    ReplyDelete
    Replies
    1. I don't really know, Kenny. I'm not a doctor. But I'm not sure why you'd want to take iodine, postassium iodide and bee pollen. I'd suggest speaking with your own physician before beginning a new program. I put together a program for my husband, using peer-reviewed research and a book by a real doctor, Dr. John Cooke of Stanford University. It's called the Endothelial Health Program, and it's online for free. Here's the link (you'll need to copy it into your browser, since there are no hyper links in comments. Best, Joan
      http://www.ccsvi.org/index.php/helping-myself/endothelial-health

      Delete
  2. Thank you for sharing Joan from me here in UK please keep speaking out always .

    ReplyDelete