What I want from my physicians:
1. Take an interest in learning about Myalgic Encephalomyelitis (ME)
a. Not JUST as a definition of illness
b. ABSORB what it means to be consumed with the multi-systemic symptoms that are outlined in the International Concensus Criteria (ICC)
c. Familiarize themselves with the FACTS that just because People With ME (PWME) aren't presenting with the length of symptoms in their presence doesn't mean that they aren't experiencing those symptoms regularly or often enough for them to be of note and to be considered debilitating.
d. We NEED their immediate understanding in order to prevent any further catastrophic loss of the precarious hold we currently have on the semblance of health we have at the present time. Our lives and our wellbeing are NOT experiments, tokens or any other inanimate pawn that can be gambled with or taken for granted.
e. Many of us have already been hanging on for decades, our health stretched to it's maximum tolerances, slammed against the side of cliffs and then once again pulled out like a weakening rubber band. The problem is that everything in life has limits and eventually things pass the point of elasticity where they can no longer return to their original form or they will simply break irreparably.
f. Learn about what it's like to live WITH ME
2. Develop an understanding about how the illness affects PWME and how they need support in the rest of their lives.
a. Simply leaving the house can not only be exhausting, it can worsen the illness.
- Therefore, additional home healthcare may be critical.
- Follow-up appointments need to be minimal
- Prescriptions should be written for as much of a quantity as possible to minimize visits
- WE NEED PHYSICIANS TO ADVOCATE FOR PATIENTS about the harm legislators are doing against patients with all of these B.S. hoops to jump through that are NOT doing anything to save lives and instead only KILLING more after first torturing them needlessly!!! (And it's certainly not just PWME, far from it!)
b. Help with symptom relief and financial relief can go a long way.
- In the USA, since the IRS requires an RX for anything/everything in order to claim medical expenses on taxes, PWME (and other chronically ill people) would basically need written RXs for anything that is purchased OTC if they don't have a medical spending account. Many of us don't have the realistic option of a medical spending account, such as if insurance is Medicare. It's exhausting (understatement) to have to remember to ask for a Rx each year for things which were originally prescribed that are now OTC, not to mention all of the other things that most people take for granted. i.e. sunglasses, earplugs, allergy masks, filtration systems, heating pads, pets (which ARE crucial for our emotional wellbeing and many of us have trained our pets to assist with various tasks such as mobility assistance and fetching, but haven't been able to leave the house or coordinate with the various organizations for certifications - not that any official certifications are required for a service dog, it would just be helpful at the slightest to have an Rx for an Emotional Support Animal and handicap placards or plates if desired.
3. Eradicate the name/terms "Chronic Fatigue Syndrome" and "Chronic Fatigue" from their knowledge base. Understand that this is as offensive as using the politically incorrect term for people of color, transgendered individuals, etc. and is essentially perpetuating the use of inappropriate language. Delete it. No dancing around calling the illness both things, dealing with confusion of people who were used to one thing, just drop it as though it's taboo, because it IS offensive, regardless of whether people understand that or not.
.Those are my thoughts, however coherent or incoherent they may be.
