Tag Archives: symptoms

An M.E. Conversation

The following is taken from James David Chapman’s page and is entitled:  “The M.E. Argument Clinic.”  It is a go-round conversation, and exemplifies some of the frustrations M.E. patients experience when trying to get a diagnosis at the doctor’s office.

Michael:       Hello, I'd like to have a diagnosis please.

Receptionist:  Certainly Sir. Second door on the right.

Michael:       Thank you!

Michael:       Hello, I've come here for a diagnosis.

Graham:        Your type make me sick!!!

Michael:       W-what?

Graham:        You feckless, work-shy, boil on the bottom of society, you...

Michael:       Wait! I came in here for a diagnosis!

Graham:        Oh, that's the next-door down. This is medical abuse.

Michael:       Sorry, thank you.

Graham:        Not at all!  ..Lazy git.

Michael:       Hello I've come here for a diagnosis.

John:          I've diagnosed you once.

Michael:       No you haven't.

John:          Yes I have.

Michael:       When?

John:          Just now. You're not ill.

Michael:       Yes I am!

John:          No you're not.

Michael:       Yes I am!

John:          No you're not.

Michael:       This is not a diagnosis; this is just contradiction!

John:          Medical Science demands that I take a sceptical view...

Michael:       No it doesn't!

John:          Yes it does.

Michael:       No it doesn't!

John:          Yes it does... By the way do you want the five minute 
               diagnosis or the full PACE trial?

Michael:       What's the difference?

John:          About 5 million pounds.

Michael:       I'll have the five-minute diagnosis please! [Hands over ten pound note]

John:          Good.

Michael:       You were about to diagnose me!

John:          Ah. It's good news: There's nothing physically wrong with you.
               Thank you! Good Day! [Pockets ten pound note]

Michael:       Now hold on a minute!

John:          [Looks up]
               Waiting around won't help you one bit. Have you tried 
               going out and exercising more?

Michael:       Exercise!? Exercise intolerance is my primary symptom!
               Exercise makes me ill!

John:          No it doesn't. Exercise makes you well!

Michael:       You're just saying the opposite of my symptoms!

John:          No. I am most definitely not just saying the opposite of your 
               symptoms. And to be honest I am a little hurt by the accusation.
               [John looks sad]

Michael:       Well, I'm sorry, but...

John:          No problem! We all just want you to be well. Perhaps you should
               modify your behaviour?

Michael:       Why?

John:          To address your aberrant belief that you need a diagnosis!

Michael:       But I do need a diagnosis!

John:          You see?

Michael:       But what about my blood tests!?

John:          Yes, absolutely; Your blood tests show that you *had* a virus. 
               But it may well have gone now: We call this a "trigger".

Michael:       But they were taken last week! They show I am physically ill!

John:          You don't think the mind and body are connected in any way?

Michael:       Well of course they are!

John:          Exactly. And remember mental illness is just as important as
               any other form of illness. Now tell me:
               How long have you had these "feelings" of being ill?

Michael:       I do not "feel" ill!

John:          Fantastic! I am glad to hear it!

Michael:       I don't think you're taking M.E. very seriously.

John:          Chronic Fatigue Syndrome is a very serious condition. I do my
               very best to try to diagnose patients. Perhaps that's why I 
               was recently honoured.

Michael:       But you DON'T diagnose us!!!

John:          I understand that it may be hard to live with "feelings of illness"
               for many years, however taking your extreme frustration out on 
               those who try help doesn't do anyone any good.

Michael:       ALL I WANT IS FOR YOU TO DIAGNOSE...

John:          I'm sorry I'm retired.

Michael:       What???!!!

John:          CFS was simply too difficult and stressful a field to work in; I'll
               be surprised if anyone else dares to diagnose you. Especially after
               your very difficult behaviour.

Michael:       But you didn't diagnose me!

John:          Yes I did.

Michael:       No you didn't; you only contradicted me!

John:          No I didn't.

Michael:       Yes you did!

John:          No I didn't!

Michael:       Yes you did ...and you did it again just then!

John:          No I didn't. Let me explain: I am diagnosing you.

Michael:       Ahhh! But if you're retired, then why are you still diagnosing me?
               Got you! You can't have retired because if you had you wouldn't 
               still be diagnosing me now!

John:          Not necessarily. I could just be diagnosing you in my spare time.

Michael:       Now listen! I've come here for a diagnosis!

John:          I've diagnosed you once...

Michael:       No you haven't!
      
John:          Yes I have.

Etc.

 

Posting On Her Blog Took All the Strength She Had

A very special lady is near death.  Her name is Brooke.  She has M.E. (myalgic encephalomyelitis).  When she knew she was going to die from this disease, she decided, at the beginning of this year, to document her experience in a new blog titled, “Documenting M.E.

It has been quite an experience to read her posts.  They took all the sparse strength she had.  Her Mom supported her decision to do this.  She no longer has the strength to post on her blog, but her Mom has promised to alert her followers as to her condition, or death.

A very brave and courageous young woman.

Here is an excerpt from one of her early posts, in which she describes the difference between M.E. and CFS (Chronic Fatigue Syndrome) and how the two became mistakenly intertwined.

ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as “MECFS,” “CFS/ME,” etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.

Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means “muscle pain and inflammation of the brain and spinal cord.” It’s a perfect fit. In 1969, the World Health Organization recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.

Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. They scanned a couple files, then spent the rest of their trip skiing and relaxing. They returned to their jobs with the official conclusion that there was nothing to worry about. Soon after, the US formed a committee to discuss the illness that caused the outbreak. There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked.

However, the diagnostic criteria the US chose to diagnose CFS is very simple and absolutely cannot be used to correctly diagnose ME. In order to be diagnosed with CFS, a person must have fatigue lasting 6 months or longer which worsens after exertion and is unexplained by any other illness (technically this alone should rule out everyone with ME, whose fatigue is explained by a WHO recognized illness). Also note that CFS is a syndrome, meaning a collection of similar symptoms, as opposed to a specific disease process. It is not and was never intended to be seen or treated as one specific illness. For a doctor to look at someone and say “You have CFS, and there is no treatment for it” is wrong. You cannot treat CFS because it is not a single illness, but a whole collection of illnesses not yet diagnosed in the people carrying the label. Think of all the illnesses out there that cause some level of fatigue. People from all of those illnesses are being misdiagnosed with CFS every day. This is why researching CFS is a waste of money. You cannot define it or find a single cause or treatment for it because there is no single “it” to research. This is CFS. “It” is fatigue from every cause under the sun, not yet diagnosed, often because doctors are under pressure not to order the expensive tests necessary to find each person’s illness.

ME, on the other hand, is a distinct, clearly diagnosable neurological illness, similar to MS (for a list of similarities between the two, click here). It is not a diagnosis of exclusion like CFS (ie, “you can only have this if nothing else explains your symptoms”). Just like other neurological diseases, it is possible to have both ME and other illnesses, even those with similar symptoms, as long as you test positive for all conditions present. And yes, there are specific tests which can diagnose ME with a high degree of accuracy – higher, in fact, than for many other neurological illnesses, such as MS. Furthermore, studies have shown that less than 1 in 10 people diagnosed with CFS actually have ME. That means 90% of CFS patients have something completely different from ME. This makes combining the two terms not only highly inaccurate, but also extremely harmful to both patient groups involved. By taking media attention and the precious few research dollars intended for ME and spending it instead on CFS, it leaves those of us living with this horrendous disease with literally no voice and no hope for a better future. All our research dollars are being spent on people who don’t even have our disease! What hope for a better future does that leave us? What hope for a cure or decrease in our suffering could we possibly have when researchers aren’t researching our disease at all, using our valuable resources instead to chase the mirage of conditions included under the CFS umbrella?

For CFS patients, linking their illness to one they do not have keeps them from finding out the true cause of their symptoms. Most fatigue producing illnesses have at least some treatment available. CFS patients are being denied appropriate treatment by doctors who are content leaving their patients with a label which basically says “I don’t know what’s wrong with you, and I’m not going to search any further.” One study found that a whopping 30% of individuals suffering from Major Depression are misdiagnosed with CFS. 30%!!! That’s unforgivable! Especially considering Major Depression is a highly treatable condition. There have also been people with cancer, MS, Lupus, Lyme disease, AIDS, and many more diagnoses, all misdiagnosed with CFS and left to suffer (and many times, worsen) on their own. If you are living with a diagnosis of CFS, I cannot urge you strongly enough to keep pushing for the real answer behind your symptoms. Keep seeing doctors until you find one as determined as you are to find your true diagnosis. Don’t give up! You’ll never find out what treatments are available to you until you first discover what is truly behind your symptoms. Do not, by any means, accept the non-answer of CFS. Every diagnosis of CFS is a misdiagnosis.

If you think you might have true ME, I recommend using the International Consensus Criteria to make that determination. It was developed and unanimously approved by many of the world’s top ME experts, and is the best tool I have found for separating true ME from other stuff. If you’d like to know more about what specific tests can be used to give a concrete diagnosis of ME, check out the page “ME tests.” If you’d like to read more about the difference between ME and CFS, as well as the politics which led to the current mess we are in, I highly recommend reading “The Misdiagnosis of CFS.” I’ll write more about what, specifically, ME is in a later post, but if you want to get a head start, I recommend visiting The Hummingbirds’ Foundation for ME, which is one of the very few websites with accurate information about this disease.

Thank you to A Rainbow at Night for bringing us up to date on Brooke’s condition in her final stages of the horrendous disease, M.E.

Dear Mr. President

After learning about Kathleen Sebelius’ resignation, I was prompted to write again to President Obama.  I usually write a letter a month, but this will be my second for April.  Will this change mean a different pressure on the reins?  Tighter or looser?  Is it too much to wish for a more positive outlook for the patients suffering from the chronic illness known as ME/CFS?  Of course, time will tell, as it always does.  But, we have to keep a positive mental picture.  And keep writing letters!

*****I’ve put asterisks before the start of each paragraph.  Copying from Word onto my post deletes the separation between paragraphs.

Here is a copy of my letter to the President:

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;

On the occasion of your acceptance of Kathleen Sebelius’ resignation, I take the opportunity to hope that her replacement, Sylvia Mathews Burwell, will do a better job of managing the health and well being of the American people. It will take more than organizational skills if the health of American citizens is taken seriously. And, I hope there will be no more “secret” contracts (IOM) without seeking bids, that have the backing of the “all-powerful” pharmaceutical industry.
*****As you know, I am an advocate for people suffering from the tremendously debilitating chronic illness referred to as ME/CFS (myalgic encephalomyelitis). I say “referred to” because it is not a recognized disease as far as the Department of Health and Human Services is concerned. And yet, how can it be ignored and pushed aside by all the departments under the umbrella of the Health and Human Services? There are more than 1 million patients in the United States, and more than 17 million who have their lives, hopes, goals, and yes, family and friends, snatched from them because of this misunderstood “invisible” illness. Patients’ numbers are growing exponentially, as more and more patients and their doctors are starting to realize that their symptoms are falling under the “umbrella” of ME/CFS.
*****May I recommend an excellent book entitled, “You Don’t LOOK Sick”? The author is Joy H. Selak PhD. To the uninformed about this chronic illness, it gives a very personal documentation of her journey from onset of symptoms to how she deals with her current living situation, and managing her illness.
*****As my daughter’s symptoms grow more intense and increase in number, her quality of life is diminishing. She is suffering constant pain, exhaustive (abnormal) unrelenting fatigue, weakness in extremities, cognitive impairment, painful migraines and so much more. Her chronic illness is getting worse. As her mother, you cannot imagine the emotional effect on me, and we can only assume the effect on her Autistic daughter. My daughter is well aware of the toll it’s taking on her life, and I marvel at her positive and hopeful attitude!
*****I hope the outcome of the IOM contract, now under way, will recognize the CCC criteria, giving these patients a medically recognized name for their illness, which will cause a surge in research and needed funding. They need advocates who have the strength and stamina to forward their cause. They cannot do it alone; they’re sick.
*****Very Sincerely,