Concerning this article: ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers (and many others like it that have come out this week with titles such as “‘Fear of exercise’ is biggest barrier to chronic fatigue syndrome recovery” and “Key to warding off chronic fatigue syndrome identified”, which are straight up lies)
It’s incredible how disconnected medical research and its media reporting can be from the reality of sufferers. I was told 12 years ago that I have some sort of chronic fatigue (called myalgic encephalomyelitis now, ME, or ME/CFS for chronic fatigue syndrome), and I know now that my Lyme infections are at the root of it all. Many ME sufferers do not yet know why they are ill, but that does not make their illness any less real or completely debilitating (and it is very likely caused by some bacteria, viruses, parasites, gut issues, environmental and chemical sensitivities, etc., etc.). I follow many people who suffer from ME on social media and I see the pain that this kind of irresponsible reporting causes. It also encourages even less understanding and compassion from doctors and society towards those who already suffer so much physical and mental strain from their illness. This is the first paragraph of the article:
“People suffering from ME should get out of bed and exercise if they want to alleviate their condition, a major study by King’s College has found.”
Are you fucking serious? If you’ve followed me here for a while, I do hope that my story allows you to see and understand how offensive, hurtful and simply ridiculous that statement is. Appropriate exercise is very important and should be encouraged, of course, but ME is no joke and when you can’t, you CAN’T. It is maddening to be a slave to your ill body like that and fear of exercise has nothing to do with not being able to get out of bed.
It should be no surprise, I guess, that “when asked whether the illness was purely psychological, Professor Chalder (of Kings College) said: “I think everything is in the brain. Some people are going to say that, but we know that beliefs are incredibly powerful as are behaviours irrespective of the nature of the illness”.”
I agree beliefs are a huge part of the healing process, but would you approach a cancer patient and tell him that his fear of nutrition is the biggest obstacle in the fight to reduce his malignant tumour, when his body just doesn’t tolerate any food intake? I spent over 10 years working on my beliefs, behaviours, and on trying my best to exercise despite my very painful and exhausted body, and if I attempt to see any sort of correlation there, it’s that all my efforts have actually been inversely proportional to me getting better… but then I know that’s not how life or science works.
[I shared this article on Facebook with this accompanying text. It turned out much longer than I expected, and so I have decided to share it here as well.
The article in question: Lyme disease bill to be challenged by infectious disease experts in Senate]
I need to share this news article, even if the simple idea of writing a text for it has me shaking like a leaf.
As I have said before, the state of affairs is horrible for Canadian chronic Lyme disease sufferers like me. I am extremely lucky to have access to Lyme disease treatment and a doctor who does not rely on old and false information concerning Lyme disease, and medicine in general. Elizabeth May, the Green Party leader, currently has a Lyme disease bill in Parliament (full text here: http://goo.gl/qmyg04) and it is definitely a step in the right direction to insure that more doctors get access to correct information and patients get access to much needed care. And sadly, but expectedly, infectious disease doctors are now taking offense.
To quote the article: “The bill appears to support the notion that significant numbers of people in Canada are suffering from a condition they believe to be chronic Lyme disease and that these individuals are being failed by a medical system that refuses to accept that diagnosis. Further, [it] suggests Canadian medical guidance on how to spot Lyme disease relies on U.S. guidelines it terms “so restrictive” that they severely limit the diagnosis, leaving sick people to suffer.”
Yes, and that’s a really good thing, unlike what these “experts” say.
As many of you know by now, I have spent the last 13 years of my life very ill with chronic Lyme disease. My health got progressively worse; I suffered tremendously, all the while trying to go on about having a normal life in my twenties because no tests showed anything wrong with me. The dozens of doctors I saw did not know to look for Lyme disease, and often times did not believe my symptoms because they affected my entire body, and this includes infectious disease specialists (more on how my visit with an infectiologist went back in 2010 here: http://wp.me/p4A0Id-7g)
Over the last few months, I have become so ill with my multi-systemic infections that I hardly get out of the house anymore, I cannot cook for myself, I shower (when I have the energy to) using a chair as I cannot stand longer than a few seconds, walking anywhere is either impossible or very hard, I spend my entire days lying down on the couch, too pained to move, too tired to read longer than a minute or do anything that requires mental concentration, I have debilitating chronic and at times acute pain all over my entire body (constant, unrelenting pain in all muscles, joints, nerves, bones, all over my face, head, neck, my entire back, my legs, my poor knees, my feet, my toes, my arms, my hands, even my skin), horrendous nausea, chronic cystitis, numbness and temporary paralysis in my limbs, spasms and tremors, daily horrible headaches and migraines and severe gastrointestinal issues (and no, I don’t feel these any less despite the fact that they’ve been around for 13 years), and by the time most people sit down for dinner after a fulfilling day I am so drained that I can hardly muster the energy to give Jan a few hugs and kisses before he carries me into bed and helps me change because I can no longer move at all. It’s really messed up to be that dependant on others for your survival. I wake up every night repeatedly drenched in sweats, obviously fighting a very active infection, and feeling exactly as I would if I’d ran a marathon yesterday while on a hangover while fighting a flu mixed with malaria with high fever along with horrible stomach poisoning.
I fight for my life every single day, every single minute. The fact that I am not constantly hooked up to machines is simply a testament to how strong my body and mind are still fighting not to let the infections take over. Every day I work hard at maintaining the conviction that I can get through this, and I manage to do so only because I now actually know what is wrong with me. My entire body is riddled with laboratory test confirmed infections, including a minimum of 4 different pathogens, and it’s a frank miracle that I have made it this far.
You think this all seems impossible? I do too, and I wish it were. But please believe me when I say that although chronic Lyme disease seems absolutely incredible, it sadly is very real, and there are thousands of sufferers like me. The good news is there are treatment options, and I’m sure we all agree that all sick people, regardless of their illness, deserve to receive help to have their health restored. Personally, I expect to make a full recovery, even though my healing will take a very long time because I have been sick for so long. In the meantime, I get to find myself totally invincible and I get to appreciate love and laughter in my life like never before. It may be all I have right now, but I have it good. Being chronically ill makes for some really hilarious comedy, and Jan and I have the best possible time with it. 🙂
But why has my health gotten so bad? Precisely because of the denial of the medical system at large and the infectious disease “experts” specifically. To say that I am very angry would be a gross understatement. These are probably the same kind of close-minded “experts” that were labelling AIDS “gay-related immune deficiency” or “gay compromise syndrome” (http://goo.gl/lxBl3P). They are scared of the unknown and simply repeat what they have been taught, refuse to review their understanding and knowledge of disease and hold back medical advancement. There is much sound research out there supporting chronic Lyme disease and the many coinfections that come with it, along with a lot of research-based treatment methods. These doctors unfortunately define “anti-science” and it’s really twisted and doublespeaky that they are considered the “experts”.
And as a parting note, I have to say that reading about those fighting for Lyme justice being called “anti-science” or pejoratively dismissed as just a “vocal Lyme lobby” is like a knife straight to my heart and makes me want to go on a rampage. I have met many people vocal about Lyme disease in recent months and they are all the most courageous, strong, medically aware and, sadly, sick people you will ever meet. We have no choice but to know our own health. All Lyme warriors fight so that others don’t have to suffer as much and as long as we have, we have nothing else to gain, but mostly, we just have very little to lose.
Without exaggerating, writing this text just depleted 90% of the energy that I had for today. But it was worth it, definitely worth it.