Tag Archives: ME

She Gives Hope To Other ME/CFS Patients

Below is a video of Carol E. Head, President and CEO of Solve ME/CFS Initiative.

Carol E. Head, President and CEO of Solve ME/CFS Initiative

Carol E. Head, President and CEO of Solve ME/CFS Initiative

She talks about her “personal walk” with ME/CFS, describing how she became afflicted with the illness.

She had goals and plans for her life when she was a young woman who had just graduated from Management School at Stanford University.

Then, she got the flu.  And you can guess what happened after that.

After going from doctor to doctor to doctor, she did seek alternative therapists, and, over the course of many years, started to see improvement, to the point where she was able to go back to work.

Her story, told briefly in this video, is reminiscent of most of all sufferers with M.E.

It’s not a long story, but you will be able to empathize with her, and take hope that it is possible to achieve some measure of improvement.

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Hurtful Words Said to M.E. Sufferers

words hurt

Day of Remembrance for Severe ME Sufferers-August 8th

Stop the ME Cover up!

 

8th August

Severe ME Day is upon us again. This is a relatively new event following its launch last year under the banner of Severe ME Understanding and Remembrance Day 2013 which focused on those who had sadly lost their battle to this dreadful disease.

Many people received this day of remembering the severely affected sufferer with open arms, and some other ME organizations advertised it by highlighting it within their own publications and websites to help raise awareness.

severe ME

This year the “ME Cover Up ” is highlighted.

For this “Cover Up” day, patients have been asked, if possible, to send in photos of themselves covered by a sheet and holding up an awareness slogan.  Below is one of many received:

coverup with sheet

Through this, patients and advocates want to show that many sufferers feel they are invisible to the outside world and believe that ME is not taken seriously.

We also want to make the point that sufferers really want and need so desperately to be “seen, heard and recognized” and to show that patients refuse to be ignored or to be invisible to the world. They may not be able to present themselves to the world because of severe ill health but they want to be listened to and heard by the appropriate governmental authorities.

ME patients also need and want to receive healthcare services, and appropriate recognition from the medical community as a whole as bona fide physically ill patients.  Also, they and advocates would like to see more desperately-needed biomedical research undertaken (most important!).

The medical profession and the general public need to understand the seriousness of the illness, myalgic encephalomyelitis, and remember that underneath the sheet there is still a human being.

Some ways in which ME is covered up:

  • By using the term “CFS” instead of the WHO (World Health Organization) acknowledged disease named myalgic encephalomyelitis;
  • By using the composite term CFS/ME to mean anything other than ME;
  • By equating ME to Psychiatric Chronic Fatigue intentionally and wrongly;
  • By using the term ME to mean a fatigue condition, not the neurological disease that it is;
  • By believing that ME is primarily caused by wrong thought and deconditioning (not enough exercise);
  • By inadequately testing for ME dysfunctions and underlying causes;
  • By psychiatry successfully promoting ME as simply fatigue and psychosis and depression to create prejudice;
  • By not providing a suitable medical health care pathway for ME;
  • By portraying the illness as less severe than it is;
  • By not meeting the needs of the most severely affected, so they become invisible;
  • and many, many others.

All these things help to cover the truth of this serious neurological disease and help to continue to make patients invisible so as not to be able to receive healthcare, social services care and they are “swept under the rug” from society in general.

 

[images and slogans from 25% ME Groupdotorg]

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.

 

Letter to President Barak Obama

I haven’t mentioned in any of my blogs that I am an advocate for patients suffering with the debilitating chronic illness commonly referred to as “ME/CFS.” I prefer to use “ME.”  “CFS” is a misnomer, and it is hoped that it will be dropped from the identifying name of this disease.

ME stands for myalgic encephalomyelitis.  M.E. is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems.  Symptoms can be multiple and vary from person to person but common symptoms include post-exertional malaise (PEM), cognitive problems (such as short-term memory loss and concentration difficulties-commonly referred to as “brain fog”), muscle and nerve pain (including fibromyalgia), muscle weakness, noise and light sensitivity, sleep and temperature disturbance, orthostatic intolerance (inability to sustain upright activity e.g. standing, sitting or walking) and sensitivity to foods, alcohol, chemicals and medicines.

I’ve been sending monthly letters to President Obama, usually referring to the HHS (Department of Health and Human Services), headed by Kathleen Sebelius.  This department oversees the NIH, the CDC, the FDA, and others, which have a great impact on how our government is supposed to care for the health of our citizenry.

Here is the latest one:

President Barack Obama
The White House
1600 Pennsylvania Avenue
Washington DC 20500

Re: The Department of Health & Human Services; National Institute of Health

Dear Mr. President;

Following are comments by ME/CFS patients and their caregivers, responding to a blog:
“The problem is that there is no leadership and accountability within the government, either by elected or non-elected officials.”
“This sort of incompetence continues throughout because no one in the government actually cares. It is just hand-wringing.”
“Meanwhile it is costing the government tens of billions of dollars in lost taxes and welfare.”
“I think a major reason why the government doesn’t want to help those of us with ME/CFS is financial. The officials do not want more people getting medical coverage from Medicare and Medicaid nor does it want more people to receive federal disability benefits. And the insurance companies do not want to pay for medical care related to this disease.”
“This is a time when disability benefits are being questioned for many people, if not outright denied, and when it’s harder to obtain Medicare and Medicaid. In fact, Medicare payments to doctors and coverage is being cut back somewhat.”
“The federal budget has been cut. Funding for agencies, which do medical research has been decreased overall for our disease and others. This isn’t a good time for medical research.”
“When the government shutdown occurred, a lot of programs were cut back. It was revealed by the media that funds had been cut back for the CDC and FDA for programs which monitor Salmonella and other food-borne diseases and for inspections of meat/poultry plants.”
“Our health is not a priority.”
“Finances are definitely a part in this government/insurance companies and combined interests.”
“Getting to the bio markers for ME\CFS has the potential of opening up that proverbial can of worms requiring insurance and disability payments AND proper treatment of a very physically sick large patient population group. AND, with that, the demand for answers from HHS, CFSAC, CDC and NIH and affiliations as to WHY ME/CFS has been largely ignored being LEFT to infect/affect/debilitate millions globally. AND, further questions–WHO has led and who continues to lead the movement AGAINST getting to the scientific answers to ME/CFS? WHY this discrimination? WHY the secrecy?”
“Finances for ME/CFS are merely a surface excuse and only part of the whole problem in lack of transparency and accountability regarding ME/CFS. For example, there is a budget of $16M annually allocated for male pattern baldness.”
“There is reasonable research funding available and allocated to many diseases. In contrast, ME/CFS receives pitiful funding; and of that $1M plus is being needlessly and foolishly wasted on the IOM (Institute of Medicine) contract instead of going to much-needed biomedical research.”
“I do think the government does not want to recognize one more disease because of the funding and research. I believe there was resistance to funding AIDS research and treatment for quite awhile. I think that the AIDS activists, especially ACT-UP and others who were really public, pushed the government to do the research and fund it.”
“I could also surmise that because this is primarily a woman’s disease (not all, I know), that there is even less interest in funding research.”
“But I agree it isn’t only finances; it’s politics. It’s lack of interest in taking on a new challenge, in breaking with the status quo. The disease is an enigma. It would take a real concerted, unified research program to find the causes, biomarkers and treatments. Does the government want to do this? Not really.”
“Dr. Ian Lipkin, virologist, is asking patients and relatives to donate for his research. This is crazy. The government could do it, and has tons more funds than our [ME/CFS] community has, obviously. It could easily give him $1 million, even $10 million.”
“I cannot understand at all how anyone could think that all of HHS’ malfeasance and nonfeasance isn’t intentional, since the whole thing has been a bad impression of a parody of a poor imitation of trying to make progress.”
I hope the above comments, which were in response to a blog, will make it obvious to you that this is an extremely important subject, affecting over a million citizens of the United States, and over 17 million citizens of the world.
Very Sincerely,

To date, I haven’t received a response, and I don’t expect to receive any.  But, we have to go forward and hope.  🙂