"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

Monday, March 8, 2010

There's something about Mary... and Khaly

Mary Schweitzer that is. And Khaly of CFS Un-Tied. There are many others that on a daily basis I gather strength and solidarity from their continued struggle to help us all be aware of the truth.  But these two I want to specifically hug from afar today. Thank you for your insights, your hard work to get the facts recorded and published, and then to make them accessible to all PWC's (Patients with Chronic Fatigue Syndrome) and the world. 

Every day, my day starts out pretty much the same. The questions I ask myself do not vary so much.  "Can I sit at the computer today?" "Will I be able to absorb any new CFS related scientific and medical political information that may be on the WPI facebook site? "If I can actually absorb it, will I have the brain power enough to comment on the new releases and articles?" Will I remember any of it after lunch?" "If I can perform these tasks, will I be banished to the couch for the remainder of the day for exceeding my limits, with fatigue so bad I cannot hold up the remote control for the tv; or just hold the phone (I never answer on bad days, unless I want a near death experience)" Experience says yes. However, it's just so critical that I stay up to date on what is happening, that I make a silent agreement with the CFS demon that I am prepared to exist uselessly on my couch for the rest of the day if I can just mash a few keys for the CFS defensive. 

We're at war. Every day there are emergency alerts to warn PWC's and our advocates about incoming unsubstantiated findings concerning CFS, and/or quick and dirty so called 'replication' studies that must be addressed.  There are articles that proclaim shoddy findings that refute the WPI's, the Cleveland Clinic's and the national Cancer Institute's XMRV findings in Science on October 9th, 2009.  We are few to respond, because most of us are too ill to even get to a computer. But to dismiss us as useless and insignificant is a mistake. A monumental one.  I may not be able to walk around the block, but it is a strategic error to think my spirit, my personal power, and my will to live to see those pay for trying to marginalize our lives, and extinguishing the dignity of all PWC's for greed and power, are just as fatigued as my physical self.  I have a weapon. Actually I have many, but today it's about just two.

These women are fierce warriors. Their understanding of the past and present bio-medical and bio-political issues is our tip of the spear of truth.  It's because of their tenacity and dedication that I am able to mash the CFS defensive keys on my keyboard.  Countless times I have been able to use their hard work to our advantage, through links in comments I make sure to write daily, as needed.  BAM! POW! Take That, and THAT Dr. Wessely and Dr. Reeves. SLAM! Your powers are what are useless and insignificant these days.  That's right, retreat to the rear!... to your backrooms, and sort out the 'how' and the 'when', and 'who' you can blame as you sputter and fume.  And don't look to those who have been pulling your strings for the last 20 years. You can rest assured they 'think' they have obliterated any past affiliations with you already. And everything else will be blurred.  And the ones that 'think' they have safely retreated; well, they need to upgrade their arsenal. Theirs are no match for the likes of Mary and Khaly. 

So Mary and Khaly, I thank you.  Thank you for your presence. Thank you for your dedication. You fortify our ranks with courage and strength.   


  1. Well done! Yes, THEY ("The DARK Side") better watch us and worry because we are "on to them" now and in a big way. Reeves may be gone but he is STILL at the CDC and can STILL do damage to us from afar. He has also left his little clones back at the CFS shop and that's not good. So, we CFIDS sick will continue to watch and smack and scream and yell and we WILL keep it up until those that were supposed to figure out what was wrong with us do their damn jobs - finally. Though, I don't expect anything from the HHS/NIH/CDC - what have they done in the last 30 years? I look to the WPI and support them. After all, it has taken WPI only two years to figure out what may be causing our disease. Can't say that about the Federal health orgs can we.
    So, even on the bed, couch, rocking chair we CFIDS sick will fight. We have to - we have family that are vulnerable. And then there are those that are coming behind us who will follow much the same mmiserable path we have been made to take. I wish for better for all of them since WE got nothing but demeaning comments and poor health care.
    Keep writing!

  2. Oh - Yes! Thank you Mary S. and Khaly!!! I don't know how either of you do it. But we all are grateful that you do.

  3. Mary's & Khaly's blogs on the CAA are, agreed, outstanding. And their blogs are among the best we have. Of course, it's not a competition, but they are certainly among the best blog advocates we have as patients, and deserve kudos in a big way. Although there are many, I have to say that Suzy Chapman's ME Agenda and Hillary Johnson's Osler's Web (currently on hiatus) also deserve mention as two more of the best sources available for valuable info and analysis. Once you mention one or two and not others, it's as though you're leaving somebody out, so I'll leave it there in spite of quite a few others that are helpful and prominent, and my apologies to them as they probably know who they are!

    Dr. Vernon's piece was, like too much that comes out of the CAA, apparently ill-considered. I've seen this before, and although in other pieces there were points that deserved airing, they were obscured by questionable remarks that drew attention away. Which leads me to question the editing and PR acumen on the part of the CAA. Given that one would think PR is supposed to be one of their strengths, I'm left scratching my head.

    Wearing one hat for advocacy and another for scientific research may be too difficult, if not a potential conflict of interest. In any case, I appreciate that they advocate for us, but more often than one might expect, they seem to create more questions than solutions.

  4. Thanks for that. yes, I have heralded Hillary Very often here on my blog. It goes without saying she is a titan of advocacy!

    I have not heard of Suzy, but, am scampering there now. Thank you for the information!

  5. Oh thanks! Wow, thank you. And let me just turn all of that around and say that you guys all absolutely rock. I am thrilled to know each and every one of you.

    And Mary, she's in a league of her own!