Post viral infections are nothing new, so why no
data, understanding of the biomedical research or concern over PPE? Why no
research into ME/cfs especially now with Long Covid who fall into the PEM and
ME diagnosis.
Being a carer of a severely effected young
person from the age of 8 who is now 18, I have had to fight to be heard every
second of every day. I have had to find how to support and care for my son
without proper data or research. I know more about ME and PEM than that of the
professionals I meet and yet I am silenced. Mine and millions of others lived
experience can tell us so much about post viral disease and the consequences of
not giving the proper understanding and treatment. How misinformation and disinformation
by professionals, journalists and politicians have impacted in such an egregious
way.
Should the Covid Enquiry demand a full enquiry
into the history of failure, especially of the PACE trial involvement, which
allowed in opinion and bias against the science and evidence of the lived experience
of those who have had to live alone with a chronic and devastating post viral
disability? We should examine why Sir Mark Walport and others have not taken
down the pace trial and other such harmful papers.
The impact on me, my family, and my son of the
Covid epidemic is beyond words. First trauma of knowing what was about to
happen, the lack of professionals to meet the needs of those left with ME and
PEM. I often wrote “my heart fills with shame and tears” because I knew what
was to come. The inappropriate research and rehabilitation centres, the false
accusations on parent carers like me. The misuse of funds the denial of
education and all the trauma of waking up to the next fight against injustice,
discrimination, scrutiny and misinformation or disinformation from those we
should trust.
If the Inquiry into the status of cfs/ME and
research into the causes and treatment, published in 2006 had been followed up
with proper long-term data; including autopsy and biomedical research needs to
be discussed openly now? Would we or
should we have been in a better place to fight covid deaths, support and save
those with Covid damage and Long Covid. If the PACE trial had been thoroughly reviewed
by an independent inquiry after the court case, what lessons could have been
learnt and what still could be learnt.
The ME community was fighting in October 2021
the biopsychosocial model holding on to the status quo in the ME pathway. This
was extraordinary in a pandemic with many coming down with ME and PEM with no
symptoms or hospital admissions. Peter Todd was preparing legal aid for a young
man to force NICE to follow procedure and release the New Guidelines.
With the Will Quince review now underway into
ME, this review will not change the bias or the disregard to those devastated by
this pandemic. Without taking down the PACE trial no clear understanding of ME
and PEM will be gained. This Governments support to Functional Neurological
Disorder introducing IAPT and Medically Unexplained Symptoms with many in the
medical profession stating NICE is just a guideline, those that could be saved
from long term disability and be able to recover, is going to be taken away
from them, as it was with my son 10 years ago.
We need to stop the ability of bias opinion
over science, excluding evidence quoting the PACE trial to do so. We need to combine
the knowledge of postmortem, data and lived experience to be given the respect
so often talked about but not acted upon.
For me and the millions missing this is the
story of Covid, the trauma and disregard of the lived experience and to the known
medical facts.
