Tag Archives: research

Myalgic Encephalomyelitis Is Now A Real Disease!

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A guest blogger (Rivka Solomon) posted on Erica Verrillo’s blog, “Onward Through the Fog,” (both women are patients suffering with ME/CFS) and she tells her story of 25 years with this disease, and about her raised hopes upon learning that Dr. Francis Collins, Director of the NIH, has announced IT IS A DISEASE and deserves government research.  The U.S. government’s (at long last) recognition of this debilitating disease, has given hope to all sufferers, their families and friends.

There is one thing, upon reading Rivka’s post, that I hadn’t known before; that is, this disease has grown so widely, that there are past and current NIH employees who are ill with it, and also, employees working for and with the NIH who have family members who are greatly debilitated by the disease.

Again, it is not only what you know; it’s WHO YOU KNOW, that will make inroads possible.  A fact of life.

A popular saying I’ve heard many times:  Cancer is such a popular disease, that there isn’t one family which hasn’t been affected by it.  It seems to me, that, as Myalgic Encephalomyelitis is growing here and around the world, there may come a time when that saying will apply to this disease.

Our NIH researchers better move quickly and make up for all the thirty years of wasted time.

DO YOU HEAR THAT, DR. COLLINS??

 

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M.E. awareness news from Norway – PM gave opening speech at awareness event

This gallery contains 4 photos.

Originally posted on A Prescription for M.E.:
I’ve started off my new blog with a “good news” story about M.E. awareness from Norway as this is a fitting end to a successful M.E. awareness month. An arts and crafts…

Cannabis and Cancer: More Patients Going Public with Pot Passions and Practices

 

Some Doctors Voice Concerns About Safety, Risks of Rx Weed

The Fred Hutchinson Cancer Research Center in Seattle WA, publishes a newsletter that is quite informative.  It is called, “Hutch News.”  They publish news about their research on cancer and a host of other diseases, including:  Myelodysplastic Syndrome (MDS) from which my late husband suffered; Multiple Sclerosis (MS); HIV/AIDS; and many others.

This latest article was interesting in that it was the first one that I’ve come across which details a good reason why perspective users of medical marijuana should beware.

Mold is a very real possibility.

The article contains stories and opinions of patients who use medical marijuana to help relieve their pain and discomfort from chemotherapy; however, I got the impression, from reading the article, that a possibility of mold infection was very low on the scale of possible side effects.

High on the scale of course, was the patients’ feelings of well-being and relief from the discomfort they experienced.  They were able to go on with their daily activities without the pain and other effects from cancer treatments.

Questions … and more questions

“Legalization has changed the conversation. When somebody asks me: ‘Did you vote for the [Washington] marijuana law?’ I say I did because I don’t think it’s something that needs to be super regulated,” Pergam added “But I think we need to use it judiciously. The question really is: How do you do that while protecting patients and then giving them access to the potential benefits that there may be?

“I want to understand the use patterns so I can give people constructive advice. If patients wanted to use it, what are the best ways to be protected? But I don’t think we know any of this data yet.”

That absence of evidence is due to the federal classification of marijuana as a Schedule 1 substance along with heroin and LSD. Drugs in Schedule 1 have “no currently accepted medical use,” U.S. authorities assert. Marijuana also remains federally illegal.

The designation essentially creates a federal monopoly on the marijuana that researchers need to study the plant’s medical potential. There is one U.S.-sanctioned pot garden — at the University of Mississippi. It’s managed by the National Institute on Drug Abuse and produces the only cannabis that’s available for federally sanctioned marijuana studies.

So, what does that leave doctors who want to answer their patients’ pot questions? Mostly: More questions.

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Some News From Jarred Younger’s Lab Regarding ME And Fibro

 

Dr. Younger is one of the stars in the continuing research regarding ME.  He has received grants from the NIH for his very important work, assisted by a very able staff at the University of Alabama-Birmingham (UAB).

We have found specific chemicals in the blood that may cause chronic pain and fatigue in many women. These chemicals are part of an immune system that may not be working correctly. We have received funding from the National Institutes of Health to continue testing the role of these chemicals in disease. If we are successful, we may not only produce an objective test of fibromyalgia and myalgic encephalomyelitis, also known as chronic fatigue syndrome, but we may also be able to develop more effective treatments for those disorders. Women participating in this study have blood draws over multiple days and record their symptoms on a handheld computer.

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New Clues into the Cause of Autism

 

Recently published results of researchers at Yale University, studying the brain and autism, have highlighted the value of turning stem cells from autistic and “normal” patients into “organoids.”

Flora Vaccarino, MD, a professor of child psychiatry and neurobiology is the head of a team of researchers at Yale University, which took stem cells from patients and “grew” them into “organoids.”  These stem cells were actually grown into brain cells so that the researchers could compare those with “normal” brain cells.

brain_organoidsx519

Brain organoids made of stem cells from an autistic patient (right) contained more proteins (red and green) associated with a particular type of neuron than did organoids made from the patient’s father’s cells (left).

This research could help determine what causes autism in one out of 68 births.

Organoids grown from stem cells have been used to study the heart, the intestines, etc.  It is a very interesting new science, and which has been and will be used more frequently, to find that perhaps the diseases of today may not be the diseases of tomorrow.

[The organoid images for this post are from BioMedicine News.]

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ME/CFS – Myalgic Encephalomyelitis. “It Is Biological, Not Psychological” Per Dr. Mady Hornig

 

If you haven’t viewed the following video, showing Mady Hornig, MD, director of translational research at the Center for Infection and Immunity and associate professor of Epidemiology at Columbia’s Mailman School, speaking about their findings, now is a good time to do it.

According to Dr. Hornig, there is biological evidence, determined by the levels of 51 immune biomarkers in blood plasma samples taken from 300 ME/CFS patients and compared with 350 healthy people as controls, proving this is a disease.  These findings are the evidence which strongly support hers and her team’s beginning assumptions.

Dr. Hornig devotes some time in the short video to describing how patients have trouble getting a diagnosis; and many times, they go for from one year to up to 10 years before they find a doctor who will give them their diagnosis.  Uninformed doctors and clinicians cannot understand the disease; in fact, many have not heard of it.  Others deny that these patients are sick.

This is not news to patients suffering from ME/CFS.  They, more than anyone else, know their sufferings are not imagined.

Dr. Hornig’s conclusions are just the beginning.  There are many highly qualified scientists and researchers who have come forward, and more are coming forward, and have started their search.  Since this disease (IT REALLY IS A DISEASE!) has many symptoms and affects literally every system in the body, the job of finding biomarkers that can be established as definitive causes, is monumental, and not for the slight of heart.

If the NIH (National Institutes of Health) would have granted and will grant more funding for ME research, we would have been so much more ahead in this very important research.

Listen to Dr. Hornig’s short (2 minutes) report, in which she clearly states the problems of the disease as they affect patients, and the results found in her research.

 

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267% Price Increase for Ampligen

Ampligen’s manufacturer really doesn’t want the clinical trials to continue; otherwise, why would they slap on a 267% price increase? From $15,600 to $41,600 per year? It may be impossible for trial participants, who have uprooted their lives and their families’ lives, and moved to where the trials are being held, to continue.

Please read the following letter that Jeannette Burmeister wrote to Dr. Janet Woodcock, the FDA’s Director of the Center for Drug Evaluation and Research. asking for reasons and answers about this unbelievable price increase by the manufacturer, Hemispherx Biopharma, Inc.’s (“HEB”).

Thoughts About M.E.

I just sent the following message regarding Hemispherx’s extraordinary 267% price increase for Ampligen to Dr. Janet Woodcock, the FDA’s Director of the Center for Drug Evaluation and Research:

Dear Dr. Woodcock,

I am writing to you regarding a matter of grave concern for the patients in Hemispherx Biopharma, Inc.’s (“HEB”) AMP-511 open-label clinical trial for Ampligen, a drug highly effective for many ME (or as the FDA calls it “ME/CFS”) patients. I have testified at the Ampligen Advisory Committee meeting and other federal committee meetings in favor of FDA approval of the drug and I remain convinced that this drug should be approved by the FDA without further delay because many patients would benefit from it and because there are no other FDA-approved pharmaceutical interventions for ME.

I have been a study participant for over three years. Last night, I learned through ME Action’s blog (http://www.meaction.net/2015/08/10/ampligen-price-increases-substantially-available-soon-in-europe/) that the…

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Is ME (Myalgic Encephalomyelitis) A Hidden, Mysterious Disease?

 

It isn’t.

It might seem like it, according to the treatment it gets from our highly-regarded Health & Human Services Department (HHS), National Institutes of Health (NIH), Centers for Disease Control (CDC) and other sub-departments of the huge HHS.

It seems like there is a vendetta against ME patients in the U.S., and also in other countries, where very ill patients are diagnosed and treated for psychosomatic illness, when they are really suffering from a multi-symptom, extremely painful and debilitating disease.

The whole body is affected.  Not just nerves; not just the brain, not just the lymph nodes; not just the immune system; not just the muscles, not just the major organs of the body – BUT ALL.

Another thing:  Approximately 80% of patients who are suffering with ME are women.  Some scuttlebutt I’ve heard has suggested that, since such a huge percentage of patients are women, some governmental entities may not put as great importance on funding for research for ME as they would if the disease was weighted differently.

The other 20% is comprised of men and children.  Yes, children!  Also, it is not unusual for members of the same family to fall ill with ME.  Outbreaks have also been reported within communities.

blue ribbon for me

Unraveling the “mystery” about ME:

 

  • Myalgic encephalomyelitis (ME) is a debilitating, often disabling, illness recognized as a neurological disorder by the World Health Organization since 1969.

  • After an outbreak in Nevada in the 1980s, the CDC coined the term “Chronic Fatigue Syndrome.”

  • There are no FDA-approved treatments and no diagnostic tools for ME.

  • Between 836,000 and 2.5 million U.S. residents are afflicted with ME, with 84 to 91 percent not yet diagnosed. True numbers are highly under reported

  • ME-related medical expenses and lost productivity cost the U.S. up to $24 billion annually.

  • In research funding, ME receives less money for research than hay fever, and ranks far below similarly disabling illnesses; such as:

  • 1) ME: About $2 per patient per year in NIH funding ($5 million in FY2015);

  • 2) Multiple sclerosis: About $250 per patient ($103 million in FY2015); and

  • 3) HIV/AIDS: About $2500 per patient ($3 billion in FY2015).

  • Patients with ME score more poorly on quality of life surveys than patients with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.

  • At least one quarter of ME patients become housebound or bed bound, often for years. Many become unemployed.

Loss of job as disease progresses has dire economic consequences for patients, families, and the country as a whole, when considering the loss of productivity.

Ask most any person in the medical community if they heard of “ME” or “Myalgic Encephalomyelitis” and, guaranteed, almost all will answer, “No.”  Ask if they’ve heard of “Chronic Fatigue Syndrome” or “Chronic Fatigue” and more often than not, they will say, “Yes.”  But, they really have no idea at all what it is.  I speak from my own personal experience.  The many doctors I’ve visited over the last year, when asked, had the identical response.  Also, this type of response is reported by patients when questioned about their doctor visits.  Too often, they encountered uninformed and uncaring doctors.

Medical schools should begin instituting information about ME in their curricula.

Thank the CDC representatives for that great faux pas 30 years ago in Nevada, while investigating an outbreak, when they imprinted “Chronic Fatigue Syndrome” (CFS) on all patients, and which, unfortunately, stuck.

The ignorance shown in the face of a “mysterious” disease 30 years ago is continuing.

 

[Indented information is from #ME Action]

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#ME Where Are We?

 

During the first half of this year, there was much going on in the Health and Human Service (HHS) Department and regarding ME (Myalgic Encephalomyelitis):  we had the IOM’s (Institute of Medicine) outstanding, positive report (in my opinion) and then there was the P2P (Pathways to Progress) report.  The former was indicative of forward movement in the cause of ME and the latter, was not.

We’ve been ignored.

There were stand-offs, delays, and hidden refusals when the FOIA was used to obtain documents vital to the ME cause.

And where are we?  After all the hullabaloo and interviews of patients including Laura Hillenbrand, author of “Seabiscuit,” Jen Brea, co-developer of a movie, “Canary in a Coal Mine,” I ask again:

Where are we?

It looked like we had some strong headway for a while, in getting ME recognized as a VERY SERIOUS disease (which it is of course), and as such, needed MUCH MORE grant money from the NIH (National Institutes of Health) for some serious and more timely research.

As far as I can see, we are not much further along in our battle – yes, I said, “battle” – to get concrete help for our ME patients – in order to get them out of the greatest “funk” – in the world.  My choice of word – being polite.  I am totally frustrated, angered, impatient, sad, screaming inside.

People running and doing walks, making videos, giving speeches, begging Congress, growing gofundmes on the Internet, writing articles in popular newspapers and magazines, yada, yada.

Still, I ask, “Where are we?

 

 

 

Out Of The Mouth Of A Marijuana User

 

Cyd Maura, is a responsible woman, a marijuana user, well educated, and no one would ever think she was a “stoner.”

Her short video explains her experiences and beliefs: