"Voices from the Shadows"
I know this costs $3.00 to rent, and probably most people wonât take the time to watch thisâŚ
But if you could, at least, take the time to read what follows:
Recently, one of my friends with ME/CFS committed suicide. His name was Mathieu. He was a young, bright, previously very active 34 year old man that loved life, but couldnât find any resources or support in relation to ME/CFS; and couldnât accept the idea of spending the rest of his life stuck in bed, in pain, suffering from multiple environmental sensitivities and cognitive problems (ex: being unable to read a book, or follow the plot of a TV show), among others.
ME/CFS signs and symptoms generally include (source: http://www.hfme.org/themesymptomlist.htm ):
Neurological signs and symptoms: - Inconsistent central nervous system function - Vertigo, disequilibrium and proprioception difficulties (e.g. lack of sense of âupâ and âdownâ with eyes closed) - Temperature dysregulation and poor tolerance for hot or cold environments - Hyperacusis (sensitivity to noise) and photophobia (pain/relapse on exposure to light) - Pain and pressure at the back of the head (where the head meets the neck) and behind the eyes - Blurred vision, blacked-out vision, nystagmus, wavy visual field, and other visual disturbances - Stroke-like or coma-like episodes - Seizures and âsensory stormsâ (while conscious) - Sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm - Many other varied neurological symptoms and abnormalities
Vascular and cardiovascular signs and symptoms: - A very high heart rate, chest pressure, heart pain and a fluttering/straining heart - Very low blood pressure particularly when upright (e.g. 84/48 or less in an adult at rest), orthostatic tachycardia/POTS and reduced circulating blood volume (up to 50%) - Feet burning painfully and turning blue/purple on standing (Reynaudâs phenomenon) - Pain/discomfort/poor digestion following meals
Muscular signs and symptoms: - Muscle weakness and paralysis (affecting all muscles including the heart, eyes, digestive system etc.) - Muscle pain, twitching and uncontrollable spasms - Difficulty breathing and air-hunger, difficulty swallowing/chewing - Paresthesias, polyneuropathy or myoclonus
Cognitive signs and symptoms: - Word-finding difficulty, scanning or disjointed speech, speech reversals, difficulty or an inability to speak - Difficulty comprehending speech or delayed speech comprehension - Handwriting changes, difficulty writing or comprehending text - Difficulty with even basic mathematics (dyscalculia) - Difficulty with simultaneous processing, concentration, spatial perception and with sequencing - Difficulty making new memories, recalling formed memories and with immediate and delayed visual and verbal recall (e.g. facial agnosia). There is often a marked loss in verbal and performance IQ
Other signs and symptoms: - Nausea, vomiting and feeling âpoisonedâ and very ill - Throat and gland pain/tenderness, chills and low grade fevers - Food allergies, alcohol intolerance, hypoglycaemia and sensitivity to common drugs/chemicals - Ghastly pallor of face with frequent lupus-like submaxillary mask or facial vasculoid rash - Parkinsonian rigidity of facial expression
Etc.
Many general practitioners / family doctors do not know what it is, much less how to treat it. Others argue that this is a somatic symptoms disorder and can be cured with cognitive behavioral therapies as well as graded exercise therapy.
However, most patients usually lead a happy and healthy life prior to falling ill - many of them athletes - and are desperate to return to their prior level of functioning. They still hunger for everything they loved to do! Their bodies simply arenât following. And they canât reproduce the same performance from one day to the next if pushed beyond their limits (see here for more details: http://phoenixrising.me/archives/17902 ).
Unlike other chronic diseases like heart failure or systemic lupus where you are referred to a cardiologist or rheumatologist; there arenât any specialists that those patients can easily be referred to for follow-ups and treatmentsâŚ
And the very few specialists that will accept to treat or follow patients with ME/CFS are extremely rare. There are only two in Montreal, and they are no longer taking any patients.
Community programs to help with housing when the person is out of work (because they are unable to move from their homes or often their beds; and the insurance companies have stopped paying because they do not believe that the patientâs illness is physiological; but psychosomatic or they are malingering) take too long to relocate us. And the hospitals donât want to keep us because they canât find whatâs wrong and donât know how to treat us.
According to Statistics Canada, the estimated number of patients affected is 400Â 000 (in comparison, there are 150Â 000 people with multiple sclerosis). Most people start falling ill between age 30 and 50; but there are some children and teenagers who are severely affected, too.
Here are what some professionals who do work with those patients have to say about ME/CFS:
âMy H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.â âDr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami (âReaders Ask: A Virus Linked to Chronic Fatigue Syndrome,â New York Times, October 15, 2009)
âIn my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.â âDr. Daniel Peterson (Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)
âThe whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane.â âDr. Paul Cheney, CFS researcher and clinician (comment made at the Invest in ME conference in May 2010)
âHopefully one day, my dream is that our medical community will produce a formal apology to the patients thatânot having believed them all these yearsâthey are facing a real illness.â âDr. Jose Montoya, CFS researcher and clinician, Stanford University (during a lecture on Chronic Fatigue Syndrome at Stanford University on March 3, 2011)
"Weâve documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.â â Dr. William Reeves, former CDC Chief of Viral Diseases Branch (2006 CDC Press Conference)
âThe bad news is we donât know what causes it or how to treat it successfully. But the good news is that there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. Itâs not an illness that people can just imagine that they have, and itâs not a psychological illness. In my view, that debate, which has raged for 20 years, should now be over.â â Dr. Anthony Komaroff, CFS clinician and researcher, Harvard Medical School (2006 Press Conference)
â[ME/CFS patients] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.â âProf. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)
And most importantly, because I feel this illustrates what Mathieu went through: âNearly every patient with CFS thinks of suicide at one time or another, but rarely can the impulse be blamed exclusively on mere physical pain and disability. I have discovered that most people learn to tolerate those things, particularly the tough breed of people who live out in the country. Instead, CFS sufferers are driven to suicide by loneliness and self-doubt, which arrive part and parcel with the disease itself. Although they are ill with a debilitating flu-like illness every day of their lives, neighbors and even friends and family insist they look âjust fine.â Itâs an unfortunate fact that our culture has yet to accept the harsh reality of chronic disease; often, its ravages are invisible to the naked eye. But CFS carries a terrible stigma, the burden of which weighs more heavily on them even than the burdens borne by most victims of chronic disease. The world seems to believe that people with CFS â a population the medical profession has yet to stamp with its imprimatur of âbona fideâ â could âsnap out of itâ if they really wanted to. This utterly false perception of the disease is so widespread that, eventually, most patients with CFS, especially those who become increasingly isolated, have periods when they begin to suspect: âmaybe I am just crazy.ââ âDr. David Bell, CFS clinician and researcher (Faces of CFS, ebook).
So please, I never beg, but for once in my life I will. Even if you do not watch the movie, share this.
Patients with ME/CFS are clinging to every little bit of hope they can find, and any sign of support you are willing to show might save a life.











