Hysterical Woman

A Feminist View on Living with Chronic Illness

  • 1st February
    2013
  • 01
Post

Hunger Strike for Ampligen

Call to action! Sign the petition at the bottom of this page to support Robert’s hunger strike and FDA approval of Ampligen for treatment of ME/CFS. FDA announces their decision tomorrow Feb. 2, so please show solidarity by signing immediately.

http://www.nbcnews.com/id/50666787#.UQydNvLFCRj

RENO, Nev. (KRNV & MyNews4.com) — It’s a debilitating disorder that effects at least one million Americans and now patients are speaking out. The drug they say that has changed their lives is up for approval with the US Food and Drug Administration. “I can go to ball games, watch my kids play their sports, I can just interact with them and without the drug I cannot,” Chronic Fatigue Syndrome patient Robert Miller says. Janet Smith is urologist in Incline Village. Robert Miller of Reno is a father of two, they both battle Chronic Fatigue Syndrome. CFS is a disorder according to the National Institute of Health causes extreme fatigue, but not the kind of tired feeling that goes away after you rest instead it lasts for long periods of time and limits ordinary activity. Ampligen has changed their lives along with at least 70-percent of the patients they say their doctor has treated. But now the drug is facing scrutiny and they say it’s come down to now or never. The FDA has until February 2nd to approve the drug’s application. “It’s time,” Smith says. But when we met with Robert and Janet they were unsure of where the FDA was leaning and it has pushed them to a point of what Robert calls affirmative action. Robert has chosen to go on a hunger strike for the past two days and counting until the FDA makes a decision. When News 4 arrived at the Miller’s home Robert was on the phone with a representative with the FDA. When asked how the phone call went Robert stated, “not reassuring.” There is no universally accepted drug that is approved for CFS, but Robert and Janet rely on Ampligen designed by Hemispherx Biopharma. The company has been trying for 20 years to get the drug approved with the FDA. “In 20 years time there’s been no question about his not being a safe drug. Now it comes D Day to make a determination and all of a sudden these issues are being raised about safety and there not being efficacy. It makes absolutely no sense to me,” Miller says. Robert and Janet both feel now could very well be the last chance to get Ampligen approved. If it doesn’t the say the company simply can’t afford it and brining on new investors after a drug isn’t approved by the FDA. They say would be difficult at best. Now all they can do is wait and time is running out. News 4 did contact the FDA and they say they are not allowed to comment on pending applications. We also spoke with Hemispherx Biopharma E xecutive Vice Chairman Tom Equels and he says the FDA does have the ability to push the date back and as of this afternoon they had not heard from the FDA.


Sign the petition to support FDA approval of Ampligen here:

http://www.ipetitions.com/petition/ampligen/

  • 21st June
    2012
  • 21
ME, CFS, & Fibro Patients Against Psychological Profiling

I’d like to invite everyone to join the new Facebook group I started. In just one month we have already had 66 members join, and we are having some great conversations. It is a good mix of people so far, and conversation ranges from talking about advocacy, current research, treatment options, to our personal experiences of discrimination and other social issues. Basically anything goes, as long as you believe these are not psychological diseases and are tired of being treated as if they are. 

I started the group in response to feeling like another FB group I was on was being taken over by a patient who insisted that the disease is psychological. I wanted to have a safe place where that would not happen. It is tough enough dealing with that false POV from doctors and our families, so we don’t need to get those messages from other patients on a support forum. The response so far has been amazing, and I hope people will help us grow!

(We’ve changed the name from ME/CFS/Fibro Patients Against Psychological Profiling to ME, CFS, & Fibro Patients Against Psychological Profiling. These may or may not be the same disease, but the issues surrounding being treated like we have a mental illness are the same, so let’s give each other some support.)

  • 20th May
    2012
  • 20
New FB group! ME/CFS/Fibro Patients Against Psychological Profiling

Please share this far and wide! I just started this group on Facebook, and I hope you’ll all join. Share this far and wide with your friends.
Here’s the group description:

Let’s create a safe place where people who are experiencing stigma and discrimination can get together and share our stories, talk about current advances in physical research, and plot the occasional internet petition or campaign to end stigma. Let’s raise public awareness and demand drug trials and research, and explore new treatments and home remedies together. Please share this page far and wide and add everyone you know who is tired of being treated as if neuro-immune disease is “all in our heads!”


The page is a Closed Public group, so anyone can join, but people viewing the page cannot see the posts until they become a member. This way we can talk openly about our social experiences without worry about repercussions.

Please share this far and wide!

  • 30th April
    2012
  • 30
Post
This is REAL. Try typing in “Fibromyalgia is” on Google,and this is what the search recommendations will look like. The negativity and skepticism is so real. Just as real as the disease. I encourage everyone who has Fibromyalgia or ME/CFS to please participate in making a big noise about it before and on May 12th Awareness Day. Let’s get the word out to the public that we will not be bullied and denied our basic rights any longer. Let’s put so much information out on the interwebz that people actually start asking US about it, because everywhere they turn they see another video or meme, and they are actually worried about how prevalent it is. We may be stuck home on our couches, but we CAN raise awareness, and help everyone’s experience improve!

fibro-bro:

We need more awareness.

This is REAL. Try typing in “Fibromyalgia is” on Google,and this is what the search recommendations will look like. The negativity and skepticism is so real. Just as real as the disease. I encourage everyone who has Fibromyalgia or ME/CFS to please participate in making a big noise about it before and on May 12th Awareness Day. Let’s get the word out to the public that we will not be bullied and denied our basic rights any longer. Let’s put so much information out on the interwebz that people actually start asking US about it, because everywhere they turn they see another video or meme, and they are actually worried about how prevalent it is. We may be stuck home on our couches, but we CAN raise awareness, and help everyone’s experience improve!

fibro-bro:

We need more awareness.

(via fibrosupport)

  • 29th April
    2012
  • 29
Post

Taking a Stand: A “How To” Guide for ME/CFS Demonstrations

Feel free to distribute widely

Taking a Stand:

A “How To” Guide for ME/CFS Demonstrations

By Rivka

Email: Rivka (at) ThatTakesOvaries (dot) org

April 12, 2012

So you want to take a stand and make a stink — do something more visible to help your ME/CFS community? Good for you. Consider organizing a demonstration (demo) to advocate for people with ME/CFS. Consider going public, alone or with others, in your call for more respect, more attention and, most importantly, increased government funding for research and treatments.

Organizing a demo is both easy and a bunch of work. Do keep in mind this reality check: After all the energy output, you could have a mild or significant relapse. Yet also keep in mind that you will have raised public and perhaps government awareness about a devastating disability, and thus you will have done something important for the world and for your community. In the end, you will feel good about having done it. And you will have the gratitude of those who are too disabled to take this type of public stand that we all know needs to happen (in order for things to change) in cities and counties all over the globe — most especially in front of national and government health care institutions, such as, in the U.S., the regional headquarters of the Department of Health and Human Services (HHS) and the Centers for Disease Control and Prevention (CDC).

Below is a simplified, preliminary — and certainly incomplete — checklist to consider as you organize your demonstration. It does not go into great detail but rather skims over the basics, including: deciding the location of your demo, deciding the tone, reaching out to others, permits and arrests, reaching out to media and more.

Remember, you can always do a mini-demo as a solo person with a single sign. In some cases this may be a heck of a lot easier on your health, and it could still have an impact, especially if you get media attention or put it on YouTube and email the link to representatives of your national and government health care institutions.

I have included video links of my own past public and bedridden demos below this checklist. Some were solo actions and some were group demos.

== Checklist for ME/CFS Demos ==

Read More

  • 25th April
    2012
  • 25
Post

Rivka Solomon and friends peacefully demonstrating at the Health and Human Services building in Washington DC for research funding and clinics for people with ME/CFS.

I have been in touch with Rivka and she will be doing a guest blog soon, on my blog Hysterical Woman, that tells you everything you need to do to stage your own demonstration. This is just in time for ME/CFS/Fibromyalgia Awareness Day, May 12, 2012. (Though peaceful protest is a good idea any day of the year!)

Here is the link to a few more videos of Rivka and her family and friends doing peaceful demonstrations: http://www.youtube.com/user/CFSDemo/videos

As you can see by her examples, you can demonstrate from bed at home, with just one or two other people, or with a bigger group. If you can draw a sign, you can protest and demand change. If you can write a blog entry about what bothers you about living with ME/CFS or Fibromyalgia, then you can petition our government officials. The more we get this issue in the media, the more we contact our representatives, the higher the chance we will find a cure during our lifetimes!

Stay tuned for Rivka’s full instructions on how to do your own ME/CFS or Fibromyalgia peaceful demonstration…. Check back here soon!

  • 25th April
    2012
  • 25
Post
Hi there, haven't seen you on Tumblr for a little while - hope everything is okay with you.

Asked by: fridayfelts

Thanks for asking! I needed to take a break for awhile because I had a severe ME/CFS relapse last summer and late fall. Also I have been doing a lot of doctor appointments and paperwork in preparation for my upcoming Social Security Disability Insurance hearing, and really don’t have any energy to blog until that is over with.

I’ll still be here from time to time. In preparation for May 12th, Neuro Endocrine Immune Disease/ ME/CFS Fibromyalgia Awareness Day, I will be posting a few things here, so keep an eye out!

  • 20th November
    2011
  • 20
Post

Judy Mikovitz, Political Prisoner

So, if you haven’t heard, Judy Mikovitz, one of the key researchers who discovered the link between XMRV and other HGRVs and CFS - was PUT IN JAIL on Friday. It is unclear exactly why, but it is linked to a missing file cabinet of research, that Judy may not have even had access to.

She recently was fired by the Whittemore Peterson Institute, due to personal conflicts with Annette Whittemore. Firing Judy wasn’t enough for Annette Whittemore. She and her lawyers have gone about wreaking havoc for Judy, filing a huge civil lawsuit, and now having her arrested.

Here are a few blogs and articles where you can read the timeline of events and a more detailed explanation of what is happening:

http://treatingxmrv.blogspot.com/2011/11/china-syndrome-at-wpi.html

http://www.oslersweb.com/blog.htm (A news reporter’s blog about CFS/ME)

Now for my personal outlook and opinion on this…

If you want to know more about Judy, just do a search on Youtube for her name, and you will find numerous videos of this woman verbally going to bat for patients with CFS/ME. She is my hero! She is one of those people who is doing her work because she really cares for us, not just for financial gain. She has had to endure study after study of people trying to say her XMRV research is not sound, when most of the studies have never replicated her techniques. Often it seems like the media is making the call against XMRV and HGRVs not the FACTS. It would be politically unpleasant for many people if it turned out that we are all infected with an AIDS-like virus, and therefore ELIGIBLE for health insurance and other accommodation, that we often cannot get right now. It would mean we are owed a lot of apologies. I have read and watched as Judy has faced a firing range of scientists saying her research is false, that her research is contaminated with rat poop, and I don’t buy it. It was recently discovered that PCR testing, which is the standard in viral studies, may be offering false negatives, so her research has NOT been disproved, in spite of the media feeding us the message that it is. We have a ways to go before anyone should be saying it is disproved.

So fast-forward to the last few weeks, when Judy is fired, and then jailed, and forced to miss a conference she was supposed to speak at this weekend. In the past history of CFS/ME research, there has been a pattern of scientists and doctors being silenced, but never before have they been jailed. I think Judy is being made an example of… Somebody out there is saying: “This is what happens to people who get too close to the truth, and refuse to retract their science when called to do so. Directly, or indirectly, your career will be ruined, your finances drained, and you won’t know which way is up, once you’ve been dragged through the legal system.”

We are living in a police state folks, where standing on a sidewalk, making a copy of a file folder, or taking a photograph can land you in jail. Jail used to be for people who are a threat to society, but now we use it for anyone who is disliked by the Establishment. I have always been a “bigger picture” thinker, and I refuse to accept the WPI statement that they just reported the “theft” and it wasn’t their fault she was arrested. The Whittemores had other options than to vilify Judy Mikovitz, and there is something FISHY going on, I just feel it.

In this day and age, ANYTIME a member of a wealthy family has a problem with an ordinary citizen, they can call up the police thugs and have them jailed. This is how a fascist state works. If the tables were reversed, and Judy Mikovitz felt as if the Whittemores had stolen her belongings, it is laughable to think that Annette Whittemore would also be put in jail. In the US right now, wealthy people are above the law, because they are the only ones who can afford the kind of legal support you need to win a case.

These kind of arrests, of people who are NOT violent criminals, who are not such a danger to others they need to be detained, is one sign we no longer live in a free country anymore. We have the highest incarceration rate in the world, and Judy Mikovitz is the latest political prisoner. It is just sickening to watch.

I’m sure many people will disagree with me, or say I’m a conspiracy theorist, and to that I have one response: If you do the research, you will find that we ARE living in a scary situation right now, when it comes to the methods our “Justice” system is using to police our people. Our cops are getting turned into paramilitary forces, in the name of security, and innocent people have been killed and injured because of it. Anyone who threatens the ability for large corporations to make money, regardless of right or wrong, can be subject to imprisonment. I think jailing Judy Mikovitz is meant to be a signal to other researchers not to speak out too much if you actually get somewhere with your CFS/ME research. I could be wrong, but just mark my words…

Meantime, hang in there Judy Mikovitz. Thank you for being such a strong female voice, asking for government research funding into CFS/ME, and for helping keep CFS/ME in the spotlight. You are a modern day hero to many patients. It is thanks to your breakthrough research, and your willingness to speak up about it, that we have a renewed interest by science to get to the bottom of CFS/ME, regardless of whether or not XMRV is the culprit. If you keep fighting for us patients, we’ll keep standing behind you!


EDIT, 11/23/11: P.S. I would just like to say one more thing… Even if Judy ends up being fully guilty… I still stand by my opinion, because it is more about the state of our “justice” system than anything. Worst case scenario, if Judy took the notebooks… Let’s GET REAL HERE. Is the public at risk because Judy decided to go home to California? Hardly. Is the public at risk because a researcher took possession of her own work? Hardly. WHY are we spending public tax money to go after her? It is absolutely ludicrous, when our budget woes are so bad we are looking at cutting social services for elderly and disabled people! Jailing nonviolent “criminals” at the whim of wealthy people and corporations, is one place where we are wasting billions of tax dollars.

I recognize how valuable these notebooks are to WPI, but I believe there has to be a more peaceful way, mediation, or nonviolent communication, that could help resolve this issue without CREATING a fugitive and criminal out of a brilliant researcher and patient advocate. Anyway, the day WPI fired Judy, was the day they lost the most valuable asset they had.

  • 28th October
    2011
  • 28
Post
Many people, especially ignorant people, want to punish you for speaking the truth, for being correct, for being you. Never apologize for being correct, or for being years ahead of your time. If you’re right and you know it, speak your mind. Speak your mind. Even if you are a minority of one, the truth is still the truth.

-Mohandes Ghandi

This sums up my point of view on feminism and chronic illness. Modern medicine REEKS of sexist attitudes toward women, and I will speak out against it ‘til my dying day!

  • 26th October
    2011
  • 26
Petition For An Apology From the CDC to CFS/ME Patients

Thanks to the recent news that CFS patients were successfully treated by Rituximab, an autoimmune disease drug, the director of the Norwegian health department has said CFS patients deserve an apology for not being treated appropriately. The study verifies that CFS/ME is a treatable physical disease, with 2 patients who are completely recovered and back to work. Now let’s get the CDC to apologize too! Click the link above to sign on.