Day 26 Tips and Tricks for Sofa Heroes: Cure vs Remission
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According to the CDC and NIH, there is no cure for ME/CFS - because if we do not know the cause of ME/CFS we cannot know what the cure is.
Here I want to discuss the difference, however, between the words Cure, Remission, and Recovery.
Remission - Remission generally means that a patient is living symptom free, in ME/CFS this means that the patient can lead a normal life, including exercise without post exertion malaise (a defining symptom of ME/CFS). The person can have an active work life, family life, social life, and be physically active without any restrictions previously experienced with ME/CFS. A remission can ALSO mean, however, a significant improvement of symptoms - so a remission can also be defined as an improvement of symptoms without being completely resolving the disease. A relapse, then, is when symptoms or conditions return after a period of remission. If you have a contagious virus, you can be in remission and still pass on the virus because unless it has been cured from the body, it is simply dormant.
Cure - A cure requires a biomedical marker to distinguish the explicit cause for an illness, and the later absence of the biomarker and symptoms to legitimize a cure. In order to have a cure for ME/CFS we would have to be able to see a biomedical cause (for example, a virus or bacterial infection of the vagus nerve) as a diagnosis, and then eliminate this biomedical cause and its recurrence (in Cancer the patient is said to be "cured" after 5 years of remission - 5 years without any malignancies).
This is why we don't have a cure for tough viruses - viruses stay dormant in the body, leading to remission of symptoms when the immune system has built up enough resistance to the virus, but bacterial infections are cured by antibiotics, eliminating the bacterial infection from the body. (Cold and flu viruses do generally leave the body after a few weeks, but retroviruses and other viruses like epstein-barr virus, which is found in 90% of adults, will remain in the body for a lifetime). We don't have a "cure" for the common cold because it is a virus that mutates each cycle - but once the virus leaves the body (a proper immune system destroys the virus with the assistance of being hydrated, well rested, and supported nutritionally), you are cured of it.
Recovery - Recovery can be defined across a wide scale of remission. Recovery can mean anything from a slight improvement of symptoms, to something more like a full remission that leads to a cure. Some patients with diabetes have reported to be recovered (or reverse) diabetes by making lifestyle changes, but it doesn't mean it eliminates the predisposition to the condition. With ME/CFS the goal is in recovery - supporting the system so that suffering is lessoned and there is a path paved towards remission.
Why this matters -
The term "recovery" has been grossly misused in the PACE Trial here in the UK. The PACE trial study indicates the graded exercise therapy and cognitive behavioural therapy led to "recovery" of the majority of test subjects - however the use of the world "recovery" still applied to patients who got WORSE as a result of the trial - or that the term "recovery" applied to people who were still severely disabled. In this terrible case many people with ME/CFS were prescribed graded exercise therapy and became worse to the point they did not recover to their previous levels of health.
If you're a patient desperately trying to get better - please do not be duped by anyone promising a cure. At best, we can understand ME/CFS based on symptoms alone and the reported suffering of patients. There are some tests and biomarkers that can help - like mitochondria functioning and vitamin and mineral levels, and viral overload levels, as well as taking the stress off of any other imbalances in the body that can be found with blood tests, and tackling these little symptoms can help the body have a better chance of healing itself.
I have met and heard stories of many people who have achieved recovery (in some cases it would even be defined under remission or cure), mostly through The OHC's Recovery Stories. Both my nutritionist and my therapist have fully recovered from ME/CFS and share their stories through The Optimum Health Clinic. I've been working with them for several years and they're wonderful people working to help people recover from the same illness they once had.
Recovery or Remission is a completely valid and honorable goal to aim for - if you're looking for a cure or nothing, you could be suffering for a long time doing nothing. The possibility of feeling better, though, is available right now with help from people in integrative healthcare and functional medicine. While recovery or remission isn't necessarily possible for everyone using integrative methods, the amount of people it has proven to help is incredibly significant.
See Alex Howard's (founder of The Optimum Health Clinic) latest video on what to expect from recovery.
Here's a clip from some of the recovery stories from The OHC.
The Optimum Health Clinic provides an absolutely crucial service to patients with ME/CFS and Fibromyalgia in that they help people recover and remiss from their symptoms through lifestyle changes. It's so important that this work is not limited to patients based on their income, so that's why I'm writing this blog challenge - to raise money for the studies that will validate the work done at The OHC so that more people have access to treatment and therapies that will help them right now while research is being done to solve ME/CFS.
If you found this helpful please help me raise money for The OHC to bring integrative health care to people going through chronic illness.
In the UK Text SOFA68 £2 (or the amount you wish to donate!) to 70070 from your mobile
Go to Day 1 for the Table of Contents of the Sofa Heroes Challenge