Tag Archives: diagnosis

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.

World Autisim Day April 2nd

Dark blue clothing and/or a dark blue ribbon is the recognizable wardrobe to signify your support for autism.
Autism Awareness Month

Autism Awareness Month

Autism is a complex neurobiological disorder that typically lasts throughout a person’s lifetime.  People with ASD have problems with social and communication skills.  Many people with ASD also have unusual ways of learning, paying attention, or reacting to sensations.  It is part of a group of disorders known as Autism Spectrum Disorders (ASD).  In most cases its causes are unknown.  Today, 1 in 110 individuals is diagnosed with autism.  Autism usually manifests in the first year of life; its onset is not later than 3 years.

 

Click here to watch a video to get a realistic view of how children suffering with autism behave, and the options available to try to help them.

There are different forms of autism.  Asperger’s Syndrome is one other form.  Children and young adults (Aspies) suffering this form, are usually extremely intelligent, so it is more difficult to diagnose.  They can learn ways to deal with social situations, but cannot communicate “normally” with people.  They usually do not start a conversation, but will answer questions put to them.  That is usually the end of the conversation.  Their social interaction is short-lived; although, these patients can focus on what does interest them.  Interests can range from animals to computer use.  It is these interests that can occupy them in an obsessive way.  Other obsessions may be present; for instance, OCD (obsessive compulsive disorder) is very common.  Jack Nicholson, in the movie, “As Good As It Gets,” played a character who had OCD.

ASPERGERSPICS

The children with more common forms, along with Asperger’s, are extremely sensitive to visual and audiological stimulation.  Their hearing can be super-sensitive and loud noises can cause extreme disturbance.

Here is a video of a young girl, Carly, who has uncontrollable body movements, but as she grows older, she has found a way to communicate through the keyboard.  It was found she is highly intelligent; whereby, before, she was thought to be retarded.

Autism, in its many forms, is striking higher percentages of children as each year goes by.  It is imperative that a cause be found.  There are many unproven theories as to what is the cause.  Could it be environment, or food, or genetic abnormalities?  Does it occur at fertilization, or in the uterus?  Without further research, no answer will be found.  This is another disease that needs the support of the good people of the world.