Tag Archives: immune system

Moving Towards Medicine For The Individual

In my advocacy for M.E., I read a great deal of articles and view videos that are posted, shared, and recommended, on the Internet.  There is a plethora of information out there, for anyone who needs or wants to fill your brain.

The huge amount of material on the following topics of:

  • research;
  • experience (as a patient or caregiver);
  • what our governments are doing (or not doing) to fund further research;
  • how the global medical community is treating M.E. patients;

seems like going through reams of textbooks at times.

M.E. (Myalgic Encephalomyelitis) is a complex chronic illness, consisting of many severe symptoms and sometimes incorporating other chronic illnesses and medical problems into the mix.

Today, I want to introduce Jeffrey S. Bland, Ph.D., who specializes in “Functional Medicine.”  He seeks to pinpoint and prevent the cause of illness, rather than treat its symptoms.  I do not adhere to all of Dr. Bland’s philosophies, but his explanation of the effect that exercise has on M.E. patients caught my interest.  One of the quotes from his book, “The Disease Delusion,” states:

“We can now start to see the future of health care and medicine more clearly.  We are moving from a medicine for the average to a medicine for the individual.”

This is a hopeful statement, and I will try to assume a positive outlook for our medical  future.

Dr. Jeffrey Bland

Dr. Jeffrey S. Bland

 

Dr. Bland’s quote that I show below is about poor exercise tolerance.  I found it to be particularly interesting because he explains how the M.E. patient’s body is affected by exercise; in that it has to do with the “energy producing machinery of cells in the brain, muscles and other tissues.”  I found his description clear.  I hope you do, also.  He refers to M.E. as “CFS.”

The one symptom that distinguishes CFS from other conditions is poor exercise tolerance.  Formerly enjoyable physical activities become exhausting, and even after modest exercise the individual with CFS is fatigued for more than a day.  This poor exercise tolerance, which has been identified as a disturbance in energy production and utilization by the body, is related to defects in the energy producing machinery of cells in the brain, muscles and other tissues.

Poor cellular energy production may also explain why chronic fatigue sufferers experience nervous system problems.  CFS patients have poor cognitive function, can’t concentrate on tasks and have brain biochemical disturbances that are revealed by SPECT scan.

Physiologists and medical scientists who have studied CFS find that the muscle cell mitochondria (the cells’ energy furnace) of the individual with CFS are changed in shape and function from those of people who don’t have this illness.  CFS sufferers’ mitochondria are swollen and have less energy-production ability, which may explain their fatigue and poor exercise tolerance.

In essence, a person who suffers from CFS is unable to support aerobic metabolism (metabolism in the presence of oxygen) effectively.  His or her cells, after even minor stress, begin to produce energy in the absence of oxygen.  Called anaerobic metabolism, this condition builds up acid debris in the cells, causing cells to become “poisoned” and reducing energy efficiency and function of the tissue or organ.

One body system that’s highly dependent upon proper energy production and utilization is the immune system, the set of specialized cells which help the body defend against disease.

The white blood cells of the immune system are active metabolizers, and debilitation of their mitochondria by conditions such as poisoning can result in poor immune function.  Poisoning of the white blood cells’ mitochondria may account for the immune abnormalities in the CFS patient.”

 

[image from jeffreyblanddotcom]

 

Hopeful News: Dr. Lerner’s Success on his Longterm Antiviral Treatment

This report, published by the Massachusetts CFIDS/ME & FM Association, is an eye-opener regarding Dr. Lerner’s treatment of ME/CFS patients who were suffering from remaining active viruses (non-latent) after initial infections.  The immune system couldn’t fight strongly enough to defeat the viral infections.

Dr. Lerner treated small groups (not controlled) who suffered with CFS/ME; some with EBV (Epstein-Barr Virus); some with cytomegalovirus (HCMV), or human herpes virus-6 (HHV-6); and some with both.

Dr. A. Martin Lerner

Dr. A. Martin Lerner

His treatment, over the course of approximately 2 years, consisted of antivirals.  These patients exhibited different stages of improvement, and many were able to resume an active, normal life, after suffering years of debilitating illness.  Cardiac symptoms also improved.

Dr. Lerner is an infectious disease specialist who became ill with CFS/CFIDS/ME.  In 1986 he began having troubles with dizziness and severe fatigue.  A visit to the Cleveland Clinic found his heart was found to be grossly dilated.  10 years later he’d figured out how to treat himself and recovered.

Prior to becoming ill, he had completed decades of research of various infectious diseases.  Over the subsequent decades, his research has concentrated on the viral aspects of CFS/CFIDS/ME; the use of antivirals in its treatment; and the effects of viral infections on cardiac activity in CFS/CFIDS/ME patients.

Patients underwent lab tests, at 4-6 week intervals, in order to be checked for signs of toxicity.  Different organs in the body (particularly the liver) could be negatively affected.  Close monitoring assisted with adjustments in the dosages of these antivirals and/or substitutions from one medication to another.

Dr. Lerner’s work is reason to hope for improvement in ME/CFS patients’ lives.

 

 

 

Video: “Get Well From ME”

I have just viewed a video of a young man who has M.E.  He looks healthy, (but of course, he isn’t) and he’s spending some time at the ocean for the shoot.  M.E. is an “invisible” disease.

I found this on Twitter @GetWellfromME.  His website is www.getwellfromme.com, where he has many videos that are enlightening and so full of information and suggestions.

He has the following announcement at the top of his site:

“ME (Myalgic Encephalomyelitis, sometimes called Chronic Fatigue Syndrome CFS) is a serious and often severely disabling long-term neurological disease which also affects the body’s immune system, hormones, muscles and circulation. Up to 250,000 people in the UK have ME, and millions around the world. There is no cure yet. But in these videos, I hope to bring together some of the best available wisdom and advice to help people manage ME and hopefully even look forward to getting at least partly better or even making a good recovery – whilst genuinely seeking to understand and support people with severe ME and who, through absolutely no fault of their own, are not getting better.”

This video is a little more than 6 minutes, but it goes quickly, because you get caught up in what he is saying.  Graphics help to emphasize what he says.  He “tells it like it is.”

 

Crowdfunding for ME/CFS Research

If you all have been reading my blogs, you must have read some about ME (myalgic encephalomyelitis).  My daughter has this debilitating chronic illness.  And, of course, I try to keep up with as much research as I can, and ways in which patients (and doctors, if they’ve even heard of it), are trying to “manage” their illness; in different ways, and with more success, than others.  And my daughter is doing her best in “keeping up” and advocating as much as possible.

I came across another blog by David Tuller.  David is a journalist who specializes in reporting about science and medicine.  He graduated from the Berkeley Graduate School of Journalism, and has articles published in the New York Times and other prestigious journals. He speaks about the disregard our government has towards this terrible, debilitating disease.  Between the pharmaceutical industry, medical insurance industry, psychiatrists and politics, ME patients are caught between “several rocks and hard places.”

In this particular blog, he talks about a scientific conference at Stanford, as well as the discussions prior to the actual meeting:

Crowdfunding For ME/CFS Research

by David Tuller, Dr.ph.  |  

In late March, hundreds of scientists, clinicians and patients gathered for a four-day scientific conference on the illness widely known as chronic fatigue syndrome but more appropriately called myalgic encephalomyelitis. (The scientific name means “painful inflammation of the brain and spinal cord;” most people these days refer to the illness as ME/CFS.)

Sunshinebright’s comment:  I was so glad to finally find an easy-to-understand definition of what “myalgic encephalomyelitis” means!

At the conference and a pre-conference gathering at Stanford, which I covered for the website BuzzFeed, attendees heard from researchers who are finding all sorts of physiological abnormalities in people with the illness. While efforts to find a single cause have not produced results, evidence presented during the meetings clearly demonstrated that something has caused patients’ immune systems to go into a state of hyper-activation. The resulting inflammation is likely to be the cause of many of the myriad symptoms that can characterize the illness.

The conference was organized by the International Association of CFS/ME, the main scientific organization related to the illness. The pre-conference meeting at Stanford provided researchers from the university the opportunity to present their own ongoing work related to immune dysfunction.

Patients were delighted by some of the research findings but disheartened by the government’s continued lack of funding support. In recent years, the National Institutes of Health (NIH) has spent only $5 million on the illness, while other conditions with fewer patients but more public recognition have received much more federal support. The scientists, too, are struggling to cope with the limited resources available, and many grumbled at what they view as the government’s long-standing neglect of ME/CFS.

One top researcher, Ian Lipkin, M.D., director of Columbia University’s Center for Infection and Immunity in New York City, has even taken the highly unusual step (for an academic researcher) of resorting to crowdfunding in an attempt to raise more than $1 million in donations for his research into infectious triggers of ME/CFS. While NIH recently granted Dr. Lipkin more than $30 million for translational research, it has refused his request for more funding for his ME/CFS efforts.