CBC Canada - Fibromyalgia/CFS patients fighting for awareness of career-ending illness

"Fibromyalgia/CFS patients fighting for awareness of career-ending illness
For years medical profession has questioned if fibromyalgia or chronic fatigue syndrome are real
Peter Dawe says fibromyalgia and chronic fatigue syndrome — diseases that can cause debilitating exhaustion, joint and muscle pain — have quietly stalked him since his 20s.
It started as a grogginess he thought was caused by hard work or lack of sleep.
But during the 16 years he was the director of the Newfoundland and Labrador chapter of the Canadian Cancer Society it got progressively worse."

"Dawe says that along with his symptoms, he was fighting the stigma fibromyalgia and chronic fatigue syndrome carry and the grinding doubts of many people, even members of medical profession, who questioned if his illness was real or "all in his head.""

"Torontonian Scott Simpson was a triathlete before he became sick. He's lived with HIV since the late 1990s, but his experience with the medical system didn't prepare him for becoming sick."

http://www.cbc.ca/news/canada/newfoundland-labrador/fibromyalgia-newfoundland-dawe-1.4545247

 

Interesting ! @ScottTriGuy

 

I'm sorry but M.E is not an "epidemic". We don't have biomarkers so how are all these 500,000+ thousand Canadians diagnosed if there are less than a handful of doctors? Phone questionnaires? Forums?

 

Epidemic is the wrong word, but the sentiment is correct, there are many afflicted and scant treatment and even less research

You don't have to have an ME/CFS specialist to be diagnosed, you just need a checklist and a doctor to ask you the questions on it. Depression for example is diagnosed by many primary care practitioners, specialists in other areas, neurologists, etc. I wonder what the actual percentage that actually see a psychiatrist are...
That said ME/CFS is not treated well in Canada just as its not elsewhere, there are no treatments, as mentioned specialists are scant, most doctors know nothing about it and many are dismissive. At least if there were some specialists in what is known so far they might be able to help the misdiagnosed patients who have similar symptoms but other conditions, run tests for other possible conditions, give lifestyle advice and there are a few supplements that help slightly. Also if they were researchers they would have a patient population and be doing research on treatments and looking for bio markers and so on

 

GPs can diagnose ME.

 

You believe GP's in Canada have enough knowledge and experience to properly diagnose a pt with M.E.?

"The cause remains unknown and these conditions are difficult to diagnose. Dawe said he had to fight for treatment because very few doctors in Atlantic Canada are knowledgeable about the conditions."

So on one hand GP's can diagnose over 500,000+ Canadians with M.E, and on the other hand there very few doctors in Canada that are knowledgeable


The M.E doctor I saw told me he has only gives this diagnosis to 10% of his patients.

 

I'm not from Atlantic Canada so maybe doctors are a little more knowledgeable in the big cities in the larger provinces.

So do you suggest we don't get a diagnosis at all? There are very few doctors in any country who are truly knowledgeable about ME. Considering that medical science has not yet figured out what ME is, how can any doctor have enough knowledge or experience when dealing with ME???

 

@TigerLilea I am referring to the poor coverage and misinformation in the article above.

Do you feel it's appropriate to give misinformation and alarmist type coverage that M.E has become an epidemic?

 

Those numbers quoted from Stats Canada do seem correct. Here's: http://www.statcan.gc.ca/daily-quotidien/150617/t002b-eng.htm some numbers on their website from previous years. Half a million is also quoted on the Canadian government webpage (https://www.canada.ca/en/public-hea...ique-syndrome-myaligic-encephalomyelitis.html).

Half a million Canadians diagnosed with CFS does seem very wrong though, given that CFS is generally underdiagnosed and not many doctors have the ability to accurately diagnose it. These numbers are based on the Canadian Community Health Survey, (you can see the questionnaire here: http://www23.statcan.gc.ca/imdb/p3Instr.pl?Function=assembleInstr&lang=en&Item_Id=260675#qb269406). The relevant question in the questionnaire just asks "Do you have Chronic Fatigue Syndrome?", with a "yes or no" option. It seems very plausible to me that people filling out the questionnaire conflated Chronic Fatigue Syndrome with "Chronic Fatigue" or even conditions that cause Chronic Fatigue (like anemia), or were diagnosed by a health professional that doesn't fully understand what CFS really is.

 

Sorry, Mij, I misunderstood you. I thought you were implying that GPs in Canada shouldn't be diagnosing ME.

Epidemic isn't the right word to describe ME, however, I think he got his point across that there are lot of us living here in Canada who suffer with this illness. I don't think he was being alarmist. The article was for the most part good, especially when you compare it to a lot of the media that comes out of the UK.

I see that they have corrected the typos in the article. I reported to CBC that half the time they were spelling fibro with a 'y' instead of an 'i'.

 

A little "off-topic", but I'm just back from the latest installment of my campaign to educate members of the Canadian medical system -- one person at a time.

Today's appointment involved a charming and enthusiastic young man who is enrolled at our local med school. He was "shadowing" my rheumatologist. I started our half hour together by asking if he was familiar with Myalgic Encephalomyelitis. "Myalgic What???" was his response. But when I mentioned Chronic Fatigue Syndrome, his face lit up: "Oh, I've attended several really interesting lectures about Chronic Fatigue Syndrome. You're the first one of 'you' I've met. Would you mind if I ask you some questions?"

My response -- "Of course not, ask whatever you want." Which led to an open discussion about ME/CFS and the whole list of co-morbid conditions I've been diagnosed with. It was actually the med student who commented that CFS had been abandoned by the medical system.

I suggested he use the terminology ME/CFS in his notes. He said: "I like that". And when I raised the issue of ME being attributed to psychological problems, he stated that was not his impression based on the content of the lectures he attended. The illness was presented as being entirely biological.

When the rheumatologist later joined us, the student apologized for not getting around to actually discussing my RA. I explained I had been doing some medical education. The rheumatolgist said "Good for you" with a big smile towards both of us. All in all, a lovely and encouraging interaction.