BACME WORKING GROUP ON SEVERE CFS/ME

With no apparent understanding of the dangers and difficulty of what they promote, the BACME working group prescribes ‘incremental pacing and grading of activities to aid rehabilitation.”
It sounds reasonable for someone in a stage of recovery after illness who is ready for rehabilitation, but, it must be stressed in the strongest possible terms, is completely unrealistic in Severe ME, where patients :
● Are severely to profoundly physically disabled with an incurable neurological disease.
● Their symptoms and pathology are ignored/denied.
● Have serious system dysfunction that can be made infinitely worse through the wrong approach.
From our experience, even the simplest exertion can lead to massive deterioration and Post Exertional Neuro-Immune Exhaustion (PENE). For nothing in Very Severe ME is reliable, rigidly increasable or predictable. The severity of deterioration is not predictable in advance and can be unimaginably horrendous. The recovery time from it can be weeks, months, years even, if pushed too hard.
Expecting active engagements in specific, regimented times, one after the other, for a person with Severe ME is incredibly demanding and controlling to an unrealistic, unreasonable degree, even if seemingly very short periods of time.

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