ME Activism Supports Mental Health
A horrible misconception about ME patients is that we insist on ME being treated as a biomedical illness because we simply do not want the stigma attached to mental illness. This is absolutely false. If ME were a psychosomatic illness, ME advocates would be happy to support it. We support the biomedical label for ME because it is scientifically accurate.
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ME patients support mental health treatment.
I have never met a ME advocate who did not believe that someone with ME and a mental health condition should not have that condition treated. We do not object to treating mental health conditions. In fact ACT and supportive mental health care is a key component of symptom management in ME and ME charities like Emerge run support groups and guide newly diagnosed patients towards seeking counseling for the feeling of helplessness and depression.
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We reject ineffective treatment.
The reason ME patients reject psychosomatic labels of the disease is that the treatments suggested by these theories are ineffectual. GET and CBT based on the idea of false illness beliefs are both proven ineffectual and harmful to patients and are no longer recommended by the CDC, Mayo Clinic Guidelines or NICE.
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We support the development of effective treatment.
Treatments that focus on the biological cause of ME are still in the early stages. However, even preliminary studies into drugs like Low Dose Naltrexone, Low Dose Abilify, CT38, and Amino Acid Supplements all show far more promise than psychosocial treatments. Similarly for long covid, the most effective treatments from a preliminary perspective appear to be those that address physical symptoms like micro clots in blood and cytokine imbalances. ME advocates want to see these potential treatments invested into, something that psychosocial models of the disease inhibit.
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It is important to treat a disease based on what is causing it.
If you try to treat anxiety by only treating nausea, fast heart rate, insomnia, etc. You will have a bad time. There is a reason that when someone has anxiety we give them anti-anxiety medications and therapy. It is because these treatments are proven effective. If we tried to treat anxiety as a physical illness without addressing the mental thought spirals and ideation it would be seen as bad treatment. People with anxiety would be displeased with their doctors. The same is true of treating ME as a mental illness.
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Mental illness treatment is not lesser it is just different.
Mental illness is unique in that a patient's thoughts play an active role in their recovery. This doesn't make recovery any easier (in fact it can make it more difficult) and it doesn't make mental illness less real or debilitating. A patient with mental illness faces a long internal struggle as part of their treatment just as a patient in a car accident would need long physical therapy sessions to learn to walk again. Acknowledging managing thoughts as a unique part of mental health treatment does not lessen the importance of mental health.
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Mental health treatment applied to physical conditions is gaslighting.
The problem is that in a physical condition like a broken leg, no amount of managing thoughts will help the leg to heal. To argue that it would, would make the person feel unnecessarily guilty for not fixing their broken leg. When in reality, only outside treatment and intervention will help to heal the broken leg. Yes, being depressed might make the experience of having a broken leg worse, but curing that depression would not fix the leg. This is why ME advocates object to the use of psychosocial treatments of ME.
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Summary
Mental and physical health conditions require differences in treatment. Acknowledging this fact and wanting the appropriate treatment for your disease does not equal seeing mental health treatment as lesser. ME charities and advocates support mental health treatment for mental health conditions, common comorbidity to ME. However, as scientific evidence points to a biological origin for ME we request that curative mental health treatments not be suggested or encouraged for ME. This is supported by both the recent NICE and Mayo Clinic Guidelines.
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Note:
Mental health issues are incredibly common and often severe in the ME community. If you are struggling please seek out a supportive therapist and/or psychiatrist who is understanding of ME and chronic illness. Seeking help for mental health issues does not make your physical illness any less valid and treating your mental health is essential to living as well as possible with ME.
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With the recent victory of publishing NICE, there has been some backlash from the psychosocial GET and CBTsupporters. One of the most common attacks launched at ME advocacy groups and individuals is that we reject the hypothesis that Myalgic Encephalomyelitis is psychological because we believe in stigma against mental illness and don't believe "Mental Health Is Health". This is completely false.
The reason MECFS advocates support a biomedical model of ME (ie. A root cause in bodily functioning not in the mind) is because science supports it. Studies have shown:
-Hypoperfusion of oxygen in the brain
-Dysautonomia not related to deconditioning
-Blood plasma biomarkers
-Deficiencies in metabolism, energy production, and oxygen utilization on 2-day CPETS
As well as many smaller studies showing other cardiovascular, neurological, and metabolic changes.
Since science supports a biological cause for ME advocates support biological interventions to address these causes. This is because it is most effective to treat physical illnesses with physical treatments and mental illnesses with mental health treatments.
There is nothing wrong with antidepressants and therapy. They are incredibly useful at treating depression, another illness that is frequently under-respected as a disability and should be better known for its severe effect on the quality of life. Antidepressants and therapy are also effective in treating depression in ME patients when it is comorbid and treating comorbid depression is an important part of ME management.
However, expecting antidepressants or therapy to cure ME is like expecting them to cure a broken leg. There is an underlying physical cause that they cannot address. (Note: some antidepressants can be used as painkillers which are great for treatment but are still not addressing the root cause of ME) To say that we want our leg treated with a cast, to have the need to stay off of it respected, to have it acknowledged that no matter how hard we think positively will not make the bone heal faster, none of this is anti-mental health. It is simply advocating for effective treatment.
