You are right that creating the label CFS was harmful. In reality it wasn't just the label though, they completely created a new definition so it captured a lot of people who don't have ME. Making ME & CFS completely different groups of patients. By capturing many people who have something that isn't ME, the ME patient group became completely buried and invisible.
We are still dealing with the same issue under the "ME/CFS" umbrella. There is a distinct ME patient group who are not recognized.
Moreover, there are many getting a CFS or ME/CFS label who have never been thoroughly screened and are delayed in getting a proper diagnosis that can often lead to treatment (and cures). It is so frustrating that there are so many missed diagnosis. Dr. Hyde wrote a book about it. Found here - https://www.nightingale.ca/publications
What is happening in the UK is terrible and killing patients.
Very interesting Coleen. Dr Kamaroff et al at Harvard Medical School did us a huge disservice by dreaming up the fatuous label CFS.
You, I and millions of others know that fatigue is not the defining symptom of our complex multisystem neurological disability.
It should never be regarded as or defined as a ‘condition.’ The impact and level of disability is mega. And all encompassing.
I saw Dr Kamaroff interviewed some months ago when he said he “regretted” he had been involved in dreaming up this minimalising and nonspecific label.
But that’s not good enough. The term should be revoked and consigned to oblivion.
Only then will we have credibility and our all body disability be recognised for the devastating deterioration we live with every hour of every day.
I live in the UK. Physicians here are mostly working for the NHS.
They get paid regardless of the quality of their work. So they don’t bother to keep up to date regarding research or the mechanics of ME.
Documented here in 1955 during an outbreak, among the staff, at the Royal Free Hospital in London by Dr Melvin Ramsay.
70 years ago next year and we still have no meds and no treatments.
Your physicians have to produce results or else they lose clients. So they’re incentivised.
Ours do nothing and care even less.
You are right that creating the label CFS was harmful. In reality it wasn't just the label though, they completely created a new definition so it captured a lot of people who don't have ME. Making ME & CFS completely different groups of patients. By capturing many people who have something that isn't ME, the ME patient group became completely buried and invisible.
We are still dealing with the same issue under the "ME/CFS" umbrella. There is a distinct ME patient group who are not recognized.
Moreover, there are many getting a CFS or ME/CFS label who have never been thoroughly screened and are delayed in getting a proper diagnosis that can often lead to treatment (and cures). It is so frustrating that there are so many missed diagnosis. Dr. Hyde wrote a book about it. Found here - https://www.nightingale.ca/publications
What is happening in the UK is terrible and killing patients.