Tag Archives: chronic disease

20th Anniversary Celebration of Osler’s Web

 

This 20th anniversary celebration of Hillary Johnson’s “Osler’s Web,” garnered dozens of media outlets’ coverage and comments by prominent people. Osler’s Web is Johnson’s documentary of the discovery of, and subsequent governmental treatment of, those terribly suffering patients with ME – myalgic encephalomyelitis, a multi-faceted symptom disease (also known as “chronic fatigue syndrome” (CFS) which is a misnomer and mistakenly gives the impression of a simple fatigue – which ME is not!). It is not an easy read but, to read it, will give you a real understanding about this greatly disabling disease and why it is so easily dismissed by those ignorant of, and unwilling to accept, its severity.

The following comment by a spokesman for the CDC (part of the NIH), government agency that is prominently mentioned in Osler’s Web), requires a looksee because it shows the historic illegal, harmful, negative and dismissive attitude of the CDC (Centers for Disease Control and Prevention} :

“Tom Skinner, a spokesman for the CDC, said his agency has gotten numerous inquiries about the allegations raised in Ms. Johnson’s book but is neither investigating them nor commenting on them. ‘We have not reviewed her book, and will not comment on her book and are not going to,’ Skinner said.”
— Dave Parks, Birmingham News

From the New York Times Book Review:  “Ms. Johnson’s book describes an important piece of recent medical history that might never have been recorded if it weren’t for her efforts.  Her carefully researched tale leaves us pondering the progress of medicine.”

Michael Kenney, Boston Globe:  “…a compelling, valuable story that takes the reader into the petty, back-stabbing world of high-stakes medical research… In Johnson’s hands, (the) cast of doctors and researchers, heroes and villains, takes on distinct personalities, and it is the interaction among them that moves the story unflaggingly along.”

Sam Husseini, In These Times:  “Ultimately, Osler’s Web tells the story not of one particular ailment and the havoc it wreaks on the human immune system, but rather the defects in our national immune system—the CDC and the NIH—which the world looks to for leadership.”

There are many more reviews at “Osler’s Web.”

 

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The DEA Is At War With Chronically Ill Patients – Again

An article on Forbes.com, written by David Kroll, caught my attention.

kratom plant

The Kratom Plant

First, it was and still is, Cannabis.  Now, it’s another plant.  A natural medicine – not artificially-produced, addictive, pain killers and human killers, known as “opioids,” by Big Pharma.

The U.S. Drug Enforcement Agency has filed a notice of intent (PDF) to place the southeast Asian plant called kratom to the most restrictive classification of the Controlled Substances Act. The plant, Mitragyna speciosa, and its two primary constituents, mitragynine and 7-hydroxymitragynine, will be temporarily placed onto Schedule I on September 30, according to a filing by the DEA today.

Mr. Kroll also states:

Various forms of kratom and teas made from the plant’s leaves are sold in cafes and on the internet. Their primary effect is to provide a short-lived peaceful and calm feeling that is described as pleasant. Consistent with this effect being opioid-like, anecdotal reports indicate that some users have used kratom to successfully recover from physical and psychological dependence on prescription opioids and heroin. Comments on my last report on kratom have also indicated the successful use of teas made from the plant in managing chronic pain without the side effects and addictive potential of prescription opioids like oxycodone, hydrocodone and morphine.

Research has shown why kratom might be a useful and safer alternative to prescription opioids:  its inherent alkaloids, metabolite and an oxidation product in the plant, minimize the opioid receptors in the body.  If the opioid receptors in the body’s cells were not reduced by not consuming kratom, you would have normal body’s “tolerance and dose escalation commonly seen with prescription opioids.”

Thank the CDC (Centers for Disease Control and Prevention – Its main goal is to protect public health and safety through the control and prevention of disease, injury, and disability) for “protecting public health” in this case; (as in the case of Cannabis – Marijuana) as well.

Last month, the CDC came out with a report that kratom “can be abused and that poison control centers have received over 660 calls between 2010 and 2015 regarding kratom intoxication.”  The report stated the plant kratom, had a “stimulant effect” and was “an opioid substitute.”  Opioids are suppressants.  How can kratom be an “opioid substitute” when it has a “stimulant effect”?  How can a plant be an opioid substitute when it actually lessens the effect of an opioid?  The plant lessens the dependency on opioids.

No scientific testing was done.  The DEA has acted only on CDC’s reports of use of kratom which showed:

  • Medical outcomes associated with kratom exposure were reported as: minor (minimal signs or symptoms, which resolved rapidly with no residual disability) for 162 (24.5%) exposures;
  • Moderate (non-life threatening, with no residual disability, but requiring some form of treatment) for 275 (41.7%) exposures; and
  • Major (life-threatening signs or symptoms, with some residual disability) for 49 (7.4%) exposures;
  • For 173 (26.2%) exposure calls, no effects were reported, or poison center staff members were unable to follow up again regarding effects.
  • One death was reported in a person who was exposed to the medications paroxetine (an antidepressant) and lamotrigine (an anticonvulsant and mood stabilizer) in addition to kratom.

The Drug Enforcement Administration includes kratom on its Drugs of Concern list (substances that are not currently regulated by the Controlled Substances Act, but that pose risks to persons who abuse them), and the National Institute of Drug Abuse has identified kratom as an emerging drug of abuse.

Among calls reporting use of kratom in combination with other substances (multiple exposures), the most commonly reported other substances were ethanol, other botanicals, benzodiazepines, narcotics, and acetaminophen.

Aspirin is a drug that could be abused; Tylenol (acetaminophen), Naproxen and Ibuprofen are drugs that could be abused.  Anything taken in huge doses, which are now “safe drugs” could turn into abusive drugs.  If a person’s intent is to inflict harm, it can be accomplished.

The last sentences of the CDC report are:

Kratom use appears to be increasing in the United States, and the reported medical outcomes and health effects suggest an emerging public health threat. Members of the public and health care providers should be aware that the use of kratom can lead to severe adverse effects, especially when consumed in combination with alcohol or other drugs.

The CDC report was based on 660 reports between 2010 and 2015 across the 50 states; more than half of which showed no harm or very little harm to those who consumed kratom.  I believe this is going “a little” overboard.

It is plain to me that the DEA and CDC are doing everything they can, to protect Big Pharma, even when it makes sense to only the DEA and CDC, for which we, with our tax dollars, are paying through the nose.  Again.  Yet.  Still.

Source:  Article by Forbes contributor, David Kroll

[Image of Kratom plant from Forbes.com]

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The Election Isn’t The Only Thing On My Mind

 

At the top of my priority list is my daughter.

It was about 25 years ago, that she started noticing symptoms of loss of stamina, unusual tiredness, lots of pain, and seemed to be fighting low-grade flu-like symptoms every so often.  They were the types of feelings that we all just dismiss (was I really feeling so bad?) and go on with our lives, hoping those body signals of something “just not right” will go away.  And, to a point, they did, and no more thought was given.

But, every so often, they were there again.  Most times, they were almost unnoticed; other times, enough to force her to go about her daily activities of caring for her children, working full time, being a thoughtful, responsible person, by “pushing through” those symptoms, and then just falling into bed, exhausted.

This went on for so many years until about 15 years ago, when she was already living close by in Florida.  She came over for dinner one Sunday, with her then husband and her two daughters.  They arrived in late afternoon, before dinner time, and she told me she needed to lie down.  She was completely exhausted and just had to go to bed.  It was like an emergency, and I hurriedly prepared the guest room bed for her, and she practically fell into it as I closed the blinds.  She couldn’t move; and slept very soundly for hours.  When she got up, she didn’t feel refreshed, but she was able to dine with us and then they went home right afterwards.  It was from that point, that the symptoms would become more frequent and noticeable.

Going to work was and is not an option as of this past January 2016.  She really should have stopped work at least a year before.  Looking back, she kept up her pace with great difficulty because she was a single mom and her younger daughter was totally dependent on her, and she worried about finances.  She was living a physical, mental, stressful nightmare.

My daughter suffers with the disease that is the reason for the letter below which is circulating in the House of Representatives on behalf of MillionsMissing (a global movement for health equality) and is addressed to Dr. Francis Collins, Director of the National Institutes of Health.

Francis Collins, Director
National Institutes of Health
1 Center Drive, Room B1-126
Bethesda, Maryland 20892-0001

Dear Dr. Collins:

We write to thank you for your attention to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and encourage you to continue to strengthen the National Institutes of Health’s (NIH) efforts in ME/CFS biomedical research.

As you know, ME/CFS is a complex, debilitating, and chronic disease afflicting 1 to 2.5 million Americans. It costs individuals, the U.S. health care system, and our economy an estimated $17-$24 billion annually. Yet, as the Institute of Medicine noted in its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” there has been “remarkably little research funding” to date to discover its cause or possible treatments.

A number of us sent you a letter in March of 2014 to express support for ME/CFS research and are heartened by your commitment to advance diagnosis, treatment, and a cure for ME/CFS through a reinvigorated Trans-NIH ME/CFS Working Group (Working Group) housed within the National Institute of Neurological Disorders and Stroke (NINDS), and new intramural and extramural research programs that will bring new investigators into the field.

We encourage the Working Group to consider in a timely manner the input received through its recent Request for Information (RFI) regarding emerging needs, opportunities, and strategies for ME/CFS research and research training. We also ask that you provide us with the current status of this planning effort and the specific intramural and extramural activities planned for the rest of FY 2016, 2017, and 2018.

Thank you for your attention to these critical issues. We look forward to your response.

Sincerely,

Zoe Lofgren                           Anna G. Eshoo
Member of Congress           Member of Congress

The U.S. House of Representatives is currently circulating the letter asking the NIH to strengthen ME/CFS biomedical research efforts. NOW, is the time to contact your representative to ask him or her to sign the letter.  Representatives have only until Wed., Aug. 31 to agree to sign the letter so action must be fast.

Here is a “Prevalence of Well-Known Diseases” comparison chart by state, which compares the number of people in each state that suffers from ME, HIV/AIDS, Parkinson’s (PD), and Multiple Sclerosis MS).  Myalgic Encephalomyelitis (ME) is quite short-changed as far as NIH funding, research and timeliness is concerned.

The following websites will be helpful if you had or will contact your U.S. Representatives:

http://www.meaction.net/wp-con tent/uploads/2016/08/Script- and-How-To-1.pdf

https://drive.google.com/file/ d/0B8cZyk4UDCJkQkhfWHJRbU1BZlU /view?usp=sharing

https://docs.google.com/forms/ d/e/1FAIpQLSd3mTxetR874PxJjDA1 AwLDPna9fSNcaKoIx- YnldwGxEerCA/viewform?c=0&w=1

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What is ME/CFS?

The Open Medicine Foundation – Nonprofit fundraising and support for a cure for Neuro-Immune Disease, Chronic Fatigue Syndrome, ME, Lyme Disease, Fibromyalgia and engages patients in research.

Please click on link below to get the real, true story in Q & A form:

Source: What is ME/CFS?

 

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One of #MillionsMissing

My daughter has ME – Myalgic Encephalomyelitis.  She’s one of those “#Millions Missing.”  On May 25th of this year, there was a world-wide campaign during which millions of pairs of shoes were placed in front of government buildings to show support for the millions of patients who are “missing” from participating in a “normal” life.  A life which they, against their wishes, were forced to leave, due to the debilitating nature of this horrible disease.

There is no known scientific diagnosis; no cure; and no recognized treatment.  Expert clinicians are still experimenting with medications, supplements, etc., while trying to find ways in which to help their patients.  Some things work – but not for long – to help relieve symptoms.  Each patient reacts differently to these “experiments.”  No such thing as “one size fits all.”

My daughter’s symptoms started approximately 25 years ago.  It was not a sudden onset like many other patients.

It occurred slowly over these many years.  The last two years were the worst.  She was still working, but truthfully, towards the end of 2014, I was positive she couldn’t continue with her job.  I don’t know how she did it, and looking back, she doesn’t, either.

She sort of set goals for herself.  Just another month, just another week.  She finally gave it up at the beginning of this January, when her body just gave up.

She cut her hair years ago.  She didn’t have the strength to take care of it anymore.  She used to have such beautiful, long hair.

There were many other activities of daily living (ADLs) she had to stop.  Frugally managing her time and energy allowed her to hold on for another year at the work site.

It wasn’t only the profound exhaustion.  There is the pain – in every part of her body.  She has told me that even her hair feels pain during the worst days.  The viral outbreaks.  The painful and debilitating chronic migraines which could last for days and keep her in bed, immobilized.  Did you ever hear of a migraine in the optic nerve?  Now, I have.

The “brain fog” and the constant wanting to put her head down and sleep.  Concentration was non-existent.  All these symptoms, put together as they were, forced her to bed.  Work was out of the question.  And she suffered all these and more, while trying so hard to keep her job and not appear to be sick at the office.  They frowned upon “being sick.”

She spends most of her days either lying on the couch or in bed.  It’s not where she would like to be.  She is forced to give up a “normal” life.

Talking on the phone is exhausting, and many is the time I’ve told her to hang up because I can hear and feel the extreme effort in her voice as it slows and gets slurry.

ME patients ARE NOT LAZY; THEY ARE NOT MALINGERERS.  Too many patients have lost their families and friends and even doctors.  These people refuse to believe the patient is REALLY SICK and they crossed the patients off their “list.”  They walked away.  That may be the most debilitating and greatest loss of all.

I’ve touched on only a very small amount of her symptoms.  The general public will find it impossible to understand that which patients go through in trying to manage from day to day; hour to hour.

Each day is different.  She never can expect that the next day will be better.  Too many times, it is worse.  There really is no such thing as “better.”  Sometimes she knows she has over-spent whatever energy (spoons) she had on the day before, and her body lets her know about it, for sure, during the next few days at least.

Myalgic Encephalomyelitis is a multi-symptom chronic disease.  All patients do not suffer in the exact same way; however, they do share most of the known symptoms.  As I said above, “each day is different” for each patient.

Sweetheart, if you are reading this, remember I love you so very much.  Words are not enough.  You know.  It is there in the depths of my being.

This post is my ode to you.  You are the most inspiring person I’ve ever known.  And you happen to be my daughter! 🙂

 

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Solve ME/CFS Initiative Takes Part in #MillionsMissing Protest

 

Solve ME/CFS Initiative President Carol Head said that following last year’s Institute of Medicine report, there is no reason for the federal government to drag its feet on aggressively funding research on the disease.

“It is the role of NIH and CDC to care for the health of their citizens, and the health of those citizens is currently being funded by ourselves for ourselves,” Head said.

The protest included a series of demonstrations by ME/CFS patients and their loved ones at locations around the country and across the world, including: Washington, D.C., San Francisco, Philadelphia, London, Melbourne, Seattle, Atlanta, Boston, Dallas, Raleigh, Canada, the Netherlands and Belfast. Protesters in D.C. assembled outside the Department of Health and Human Services (HHS) headquarters. Other U.S. protesters assembled outside the regional HHS offices.

seattle netherlands canada

Millions Missing demonstration in Washington, DC.  (Photo by Mary F. Calvert)

#MillionsMissing demonstration in Washington, DC. (Photo by Mary F. Calvert)

The shoes represent the active lives lost by the owners of those shoes due to being stricken with this devastating disease.

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[Video and photos from Solve ME/CFS Initiative]

Meet Rik Carlson – ME Patient From Vermont

 

Imagine what it’s like to be so sick you cannot function.
Imagine there is no known pathology for your illness, only symptoms.

Imagine you are too weak to find your own voice… and because you are silent and confused, your physician says, “It’s all in your head.”

Imagine.

Because your illness is invisible, you disappear.

Rik Carlson was afflicted with a sudden onset case of Myalgic Encephalomyelitis on January 2, 1995 and 18 months later was passed the baton to form the VT CFIDS Association, now ImmuneDysfunction.org. He wrote the book We’re Not in Kansas Anymore: Chronic Fatigue Syndrome and the Politics of Disease and has written numerous essays about Chronic Fatigue Syndrome. In 2006 he testified before the Chronic Fatigue Syndrome Advisory Committee in Washington D.C. In 2009 he was part of the published Obama Biden Transition Team report on Health Care in America. In conjunction with Michael Thurston, Rik directed the film Invisible. He lives in Burlington with his wife Barbara, and their cats. Their son, David, is a Marine Corps Veteran and works with Veteran’s Services at the University of Vermont.

The movie, “INVISIBLE” gives voice to a select group of Vermonters who are gravely ill, and until now, have been out of sight. You will hear first person accounts from your Vermont neighbors as they talk about living their lives with Chronic Fatigue Syndrome, CFIDS, Fibromyalgia, or Myalgic Encephalomyelitis, the disease with a thousand names and no known cause or cure.

Please click on the link below and you will be taken to a new window to view the video.

https://www.cctv.org/stream-player-build?nid=118058

[ Source:  http://immunedysfunction.org/invisible.html ]

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Invisible Disabilities: the facts & figures

Emily has put together a great post which is so enlightening, especially for people who are not aware of the several “invisible disabilities” suffered by so many. Her info is based on those diagnosed patients in the UK, but the underlying significance is that this information can be a realistic comparison relating to patients of these diseases in the other countries around the globe.

Thank you, Emily.

A Prescription for M.E.

December 3rd is the UN’s International Day of Persons with Disabilities. This year one of the sub-themes is ‘Including persons with invisible disabilities in society and development.’ Here’s an infographic with stats, symptoms and common misconceptions about invisible disabilities.

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The Scientifically Challenged UK Media Strikes Back

A must read. The Telegraph in the UK featured an article written by Sarah Knapton. Ms. Knapton goes many steps further to malign sufferers of ME than the PACE trial report did, in her report of a follow-up study.

Utting-Wolff Spouts

When I first heard The Telegraph had featured an article concerning a follow-up study of the notorious PACE trial I was inclined to ignore it1. I’ve long become used to the appalling coverage of ME by the British media2 and felt I didn’t need to read any more disinformation disseminated via the Science Media Centre. However, I cracked and had the misfortune to read an article written by Sarah Knapton that is the worst I have seen in the thirty years I have been ill with this disease, which considering the competition is an impressive achievement1.

The article clearly implies ME is a non-illness, the suggestion in the headline that a bit of positivity and exercise could cure sufferers merits no other interpretation. One wonders what spin was put on the latest study by the SMC, as the results of this research bear no similarity…

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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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