There are many beautiful, powerful images from the September 27th Millions Missing protests. My friend Tasha spoke at the #MillionsMissing New York City event, and I’m proud to share her comments with you here.

Poster-2-300x225Hi, my name is Tasha and I’ve had ME for 20 years. Like many of us, my case started with an infection – a tropical illness I caught in Angola.  For several years afterwards, my health went haywire. I would get regular throat and other infections with flu-like symptoms and I started to experience a new, extremely intense kind of fatigue, particularly after exercise or prolonged standing.  No physician could figure it out and it wasn’t until almost three years later that I got diagnosed with ME. By year 5 after the start of my illness, I was lucky enough to have recovered to 95% of my former health.  Maybe I got lucky with treatment, maybe the carefully paced lifestyle. Who knows? But just two years later, a few months after the birth of my daughter when I was a happy new mother, the illness came back – suddenly and unexpectedly and much worse than before. It was like having a familiar but completely different illness.

Because of the name “chronic fatigue syndrome”, people often think they can relate to this illness, but most truly have no idea what it really means.

  • Because of this disease, I had to spend a whole year of my life in bed – and I mean lying flat on my back 80% of my waking hours every day. Waking up in the morning and hearing the chitter chatter in the street when the children went to school and adults went to work and still being there in that same place hours later when everyone came home.
  • Because of this disease, I was not able to look after my own child. The physical demands of caring for a young infant meant that after a few hours I was so sick that I would have to call my husband to come home from work to take care of her.
  • Because of this disease, I am disabled. I haven’t been able to walk more than a couple of blocks in 12 years or stand upright for more than a few minutes without being severely incapacitated afterwards, sometimes for days. I cannot do basic tasks of daily living like cook meals, clean, take public transport to work and I have needed a lot of accommodations in order to work at all.

I still feel inside like the young adventurous 23 year old I was when I got this disease. I instinctively want to do so many things I can’t – travel, play ping pong when I see people playing, dance at weddings, or walk to the coffee shop to buy myself a cup of coffee. But one thing does feel different about me from 20 years ago. I wish it wasn’t the case. And that is that I’m angry.  I’m angry with the federal government and with the medical establishment.  I’m angry at how our disease has been neglected and how we are being treated.

I am doing my part to make sure that if my daughter or my daughter’s daughter gets this horrible illness, that there will be a cure for her. I’ve managed to work, have paid taxes to the government, and have participated in a number of research studies. I just became a U.S. citizen last month.

But we’ve watched and waited and hoped for years now (and many patients have fought hard) – and the federal government has done next to nothing. When a serious disease is being ignored or overlooked, it is the role of the federal government to step in to level the playing field. In the case of ME/CFS, the burden of that responsibility should be felt even more keenly, given the damage the federal government has done by naming the illness CFS, expropriating funds, condoning unsafe and unhelpful treatment, and failing to raise medical and public awareness.

There are so many nasty illnesses out there but I believe that  “chronic fatigue syndrome” is unique in the stigma it carries along with the lack of medical and public understanding. I can think of no other disease where the reality of the impact on people’s lives and the designated name and medical response are SO COMPLETELY out of sync.

It’s time for the federal government to step up by investing some serious research funding and run a sustained education campaign.  Also, it is time to change the name. There is no excuse for delay. If we can’t agree and if we’re not ready for a permanent name, then we need a placeholder name.  And we need it now.

This entry was posted in Advocacy and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

8 Responses to Tasha

  1. Leave the name alone – it has ‘name recognition.’

    Fix the DISEASE.

    So much money and effort has been wasted on trying to change the name. ME, CFS, CFIDS, SEID, yuppie flu… Every new name – like SEID – starts from zero.

  2. Betsy says:

    “I can think of no other disease where the reality of the impact on people’s lives and the designated name and medical response are SO COMPLETELY out of sync.”

    —great line Tasha.

  3. Leona says:

    Tasha’s story sounds all too familiar, unfortunately. I’m grateful to her (and you, and others) for advocating for all of us sufferers.

    Concerning the name quandary, I’ve always wondered why efforts are focused on finding a name that encapsulates all the symptoms. Why not name it after a person or persons, like Sjogren’s syndrome?

    I’m not an expert in the history of ME/CFS, but I’m sure there are lots of potential candidates. According to http://www.news-medical.net/health/Chronic-Fatigue-Syndrome-History.aspx , a Dr. Manningham first described symptoms in 1750 that people believe is CFS. So Manningham Syndrome or Manningham Disease.

    Or perhaps it could be named after a location, like the outbreak at Lake Tahoe in the 1980s. Tahoe Disease or Tahoe Syndrome.

    Just suggestions. Is there any reason why the name has to be in line with our symptoms? There are too many, really, to try to get in a name.

    • Jennie Spotila says:

      We’ve been struggling with this for years. The IOM panel considered a number of names, including naming it after Dr. Ramsay. They ultimately decided to stick with a symptom based name.

  4. Bobbi ausubel says:

    Jeannie, did u have an article here once about a recent study NIH is doing on studying the effect of stress on people with ME? (I think a rather stupid question, stress weakens everyone, ill or not). I am trying to get that info for a letter I am preparing to bring to NOW on Saturday. Hope you get this. Thanks for all your great articles!!! Always.


  5. Jennifer McBryde says:

    Does anyone know of a person who was diagnosed with an intracellular bacterial infection 40 years to then be diagnosed with CFS in 1989. Well I had my own story to tell and it is now in a soon to be published book “Beyond the birdcage” – it will raise some very interesting questions – What was A typical polio? – even more interesting What was polio? No one has uncovered any of the history back to 1934 – LA County General Hospital in the M.E. epidemic – then to A. Wallis M.D. in Dalston, England 1957.
    It all fits in very well with the pathogen I was diagnose with years ago but not investigated even today. It will certainly require medicine to re-evaluate their ‘no infection’ debate and the role of intracellular infections that are not cured with antibiotics. My aim is to help others as I now have better health.

  6. billie moore says:

    Yes, the name chronic fatigue syndrome has name recognition, Alicia. And that’s the main reason there’s been nothing done for the disease since it was called ME. “CFS” MUST GO. It does about as much damage as naming it the LPD – “lazy person’s disorder.”

    Incidentally, when the CFSAC considered a name change – to ME – the vote failed by a very close margin. However, had two people who were not present for the meeting been there to vote, it probably would have become a formal recommendation of CFSAC to change the name to ME.

  7. The historically outdated diagnosis of ‘Neurasthenia’ is interesting. It started in England about the time of the industrial revolution and in America as it industrialized.

    I suspect that the bias we see against ME/CFS is in the very dna of ‘industrial’ era medicine going back to legal biases of those historical periods.

    I have been diagnosed with ‘Central Pain Sensitization’ as a SEID like redefinition of fibromyalgia – even though I only see fibro when I am in an extreme PEMS state. I like CPS is that, for me, it embraces the PEMS I was reporting prior to the IOM study along with other triggers in a consistent model. I am having success with those factors under my control, but cannot tell if those factors out of my control or an underlying progression are still at work.

Comments are closed.