The Lake Tahoe outbreak of 1984 brought ME/CFS, for better or for worse, into the national spotlight. Just as in decades and centuries past, psychologists gifted themselves with a wonderful time constructing a diagnostic amusement park out of the suffering of ME/CFS patients.
Even though absolutely none of their theories panned out and not one was reported by any patient anywhere as effective, the ridiculous idea that a viral illness that often leads to lymphoma is a phenomenon of the mind has prevailed. Countless ME/CFS patients have died by suicide or other means while these psychologists run around in their playground, jumping through the triumphant hoops of their false and very harmful heroism.
Chronic illness isn’t the only place where psychology fails. How many millions have gone to these overpaid professionals only to be given false promises of an eventual end to their turmoil? How many have sought help for trauma, anxiety, etc. only to find that, years afterwards, little has changed?
But the practice of psychology is especially harmful to those with unexplained, untreatable chronic illness. We are the wet dream of the psychology world, and most professionals will take full advantage. Patronizing and condescending, they tell of some subconsciously forgotten childhood trauma that is manifesting as physical ailment and that we must work through and accept this vague circumstance. Afterwards, they happily take money from physically sick clients, and many of us are left bewildered, frustrated, confused and sometimes even doubtful of our ability to overcome this horrific hardship.
This is not to mention that ME/CFS patients already struggle tremendously financing their own tests, diagnostics and other pricy, questionably effective treatments.
Yet for all my harping on psychologists, I feel it’s only fair to say that proper cognitive behavioral therapy (CBT) can be helpful with many chronic illnesses that are understood and recognized. Multiple sclerosis patients are offered CBT and group counseling, as are cancer patients. Caregivers are also given support. Countless chronic illnesses have CBT as an effective component to treatment, but the key word here is component.
For ME/CFS and now Long Covid, this therapy, meant to ease the emotional impact of a life-changing illness, is prescribed not as a complimentary treatment but as the cure itself. This comes from the antiquated idea that ME/CFS and LC patients became sick due to a vague emotional collapse prior to their initial infection.
My latest relapse attacked me during one of my happiest periods in recent years. How does that explain emotional onset? How does a disease that is primarily psychological cause such a high incidence of lymphoma? Where does this logic come from?
I have known since the early days of my illness in 2009-2010 that this is no psychological matter. It’s biological through and through.
Yet, as recently as September 2021, an article found in the Wiley Online Library asserts that: “Research exploring psychological change following CBT for CFS/ME is in its infancy and the specific perceived relationships between coping, acceptance, fatigue and other factors are yet to be explored.”
This is despite 40-plus years of patients reporting that this therapy does little to no good and in some cases can make the illness worse.
I am so tired of fighting for proper treatment. At this point I’m not sure if I’ll see anything effective in my lifetime. It’s so disheartening to see the psychiatric field continuing to have so much fun while we lay in tangled, sweaty sheets. Awake but not alive. Outside our curtained windows, dawn becomes night becomes dusk and night again. Asleep, dead, undead and losing all hope: this is no psychosis. This is real. We are captive in this land of crepuscular doom.
Fortunately, many wonderful books and films, of which I’ll talk about in my next post, have been produced in the last 10-15 years and new interest and a sense of urgency will hopefully speed up research and speed it up fast. We deserve all of that and more.
–Bridget O’Shea