Pre-emptive Psychotherapy and PT as an MECFS Patient, a Safety Strategy… Finding Allies to Fill Dangerous Team Roles.
Problem:
While GET and CBT are no longer recommended for MECFS, many doctors still see psychotherapists and physiotherapists as central parts of an MECFS treatment team. These professionals are those most likely to subscribe to outdated theories about MECFS and potentially prescribe harmful treatments.
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Strategic solution:
One strategic solution to this problem is to get out ahead of the issue. To find a PT and therapist or counselor who is well educated about MECFS and willing to support you clinically.
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Way it can help: Expert support.
When a doctor suggests PT or therapy, instead of refusing you can now say that you are already seeing someone and offer their contact details. Additionally, if a doctor suggests GET or CBT you now have specialists who will refute and refuse those treatments on your behalf.
This can help prevent being labeled an "uncooperative" patient, something that often blocks people with ME from receiving necessary treatment.
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Ways it can help: Medical benefits.
While GET and CBT are ineffective or harmful to most pwME, there are ways that a well-trained PT or therapist can help you such as guiding your pacing, helping you with POTS or pain management, and helping you process chronic illness grief.
Additionally, these professionals often serve as useful resources for reporting your symptoms to other doctors. For example, your PT might be able to support your need for mobility aids by documenting your functional level, and a therapist may be able to advocate for receiving palliative care by documenting emotional distress caused by inadequate symptom management.
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Ways it can help: Peace of mind.
Finally for those with medical trauma or PTSD from bad experiences with GET, CBT or other physio and psychotherapy finding someone in these fields who can validate your experience can very mentally rewarding. It can also lower anxiety to know that if you are pushed into PT or mental health treatment again in the future you have someone trustworthy and safe to work with.
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Downsides:
It can be very difficult to find a good professional in these fields who is well educated on MECFS and confident enough to support you medically.
You will need more appointments to meet with these professionals which can come with monetary and energy cost.
It plays into the misconception that these professionals are a necessary part of MECFS management when many patients do not need this intervention at all.
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Practical considerations:
Here are a few questions to ask yourself if considering this strategy:
Necessity - Am I often seeing doctors who bring up PT or mental health? Do I need to interact with unknown medical professionals regularly or prove my disability status?
Access - Can I find professionals educated on ME?
Accessibility - Do I have the capacity to schedule and attend visits?
Benefit - Are there other benefits I can gain from seeing these professionals?
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Screening psychiatric candidates:
Do they specialize in severe chronic illness?
Do they understand MECFS?
Do they practice ACT?
What are their policies of psychiatric holds and hospitalization? Are they anti-carceral or do they understand the harm of hospitalization in ME patients?
See @peersupportspace @daisy.hannah.duane and www.meandmore.net/mentalhealth
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Screening physiotherapists
Do they support pacing?
Do they understand MECFS / Post Exertional Malaise?
Do they have experience with heart rate monitoring?
Do they have realistic ideas about disease progression?
See Physios for ME, @movement.with.me and my series "Movement in MECFS" for more
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MECFS has a tenuous relationship with the disciplines of Physical Therapy, Psychology and Psychiatry. In past, these doctors have harmed us, subjected us to medical gaslighting and failed to produce the magical cures they so often claim.
However, I have personally found that given the difficult position Myalgic Encephalomyelitis patients face in navigating a healthcare system that still routinely denies the scientific reality ME and often pushes patients towards PT and therapy having professionals in these spaces who understand our disease and can serve as our allies is a massively valuable form of harm reduction.
Personally, my physical therapist and mental health counselor have helped me to unlearn toxic gaslighting, helped me to validate my need to Stop Rest Pace and generally helped me find acceptance of my chronic illness and disability.
I have also been deeply harmed by inappropriate PT and therapy and suffer from PTSD due to mismanagement by these professionals. However, I have found that having supportive professionals with the credentials to support my medical reality has greatly lessened the anxiety I feel around future encounters with these professions.
In short, while PT and therapy should not be synonymous with MECFS care, finding good allies in these fields can be a very strong practical decision for self-advocacy.
Finally, while PT and therapy might not be the ideal specialties to deal with MECFS there are professionals in this space with significant experience dealing with ME patients. This knowledge can be helpful and there is often ways they can help us. Even if they will never be the source of a miraculous cure.
Good professionals in these fields will acknowledge their limited role and focus on your needs and making your subjective quality of life better. If they focus on anything else run. If they push you to doubt your illness or push through symptoms run. But if they help you live with this disease more sustainably than they can certainly be a worthwhile addition to your team.
