Thank you for allowing public comments about the CDC
5 year draft research plan.
Invest in ME is an independent UK charity
campaigning for biomedical research and better
education/information about myalgic
encephalomyelitis (ME/CFS) for healthcare staff,
politicians, media and people diagnosed with ME/CFS
and their families.
In the UK we use the term ME or ME/CFS – for the
rest of this document we shall revert to using CFS
in order to avoid confusion – though we are
referring to myalgic encephalomyelitis – the
neurological illness identified under WHO ICD-10
We have major concerns regarding this draft research
plan. Considering the CDC has some influence around
the world then it is of paramount importance that
the CDC use good science and correct approaches when
considering a strategy for CFS.
First of all the CDC needs to make sure the illness
they call CFS is well defined using guidelines such
as the Canadian Consensus Document (2003). The
Empirical Definition (2005) is a catch all
definition and is meaningless for the study of CFS.
The research plan must not confuse chronic fatigue
or fatigue syndromes with CFS.
We make these comments as we are a charity based in
the UK where the use of flawed diagnostic criteria
by the government bodies (such as the Oxford
criteria) have so disastrously compromised the
research into CFS that few have any trust in the
It is interesting to read Dr. Reeves comment, in his
introductory speech for the CDC plans, refers to the
UK as “the
only country and ministry of health in the world
that has developed a comprehensive program for
diagnosing, evaluating, and treating CFS.
This is entirely erroneous. The National Health
Service (NHS) in the UK is severely compromised by
ignorance and systemic failure to accept CFS as a
neurological illness. The situation is so bad that
the government body NICE was recently taken to a
Judicial Review by CFS patients who objected to
their guidelines for CFS. The UK NICE guidelines
were only supported by two CFS organisations who
accept money from the UK government to support
establishment policy. Over 90% of CFS support
organisations objected to the NICE guidelines.
To use the UK as any model for managing or treating
CFS patients is risible. The NHS in the UK, and the
centres set up by the government here to manage CFS
patients are badly funded, run normally based on a
behavioural illness model and offer no biomedical
lead for this neurological illness.
As such the CDC would be negligent if it proceeded
to use the UK as any model to follow for its
strategy, other than as a model of what not to do.
The psychosocial view of CFS has received the lion’s
share of public funding for research in the UK
despite widespread criticism from researchers and
the patient community. It is premature to take any
evidence based approach relying on research done in
the UK or elsewhere in Europe into the efficacy of
CBT and GET as they have been performed using the
broad Oxford Criteria. These criteria are flawed and
unacceptable for serious research. More RCTs into
other interventions than CBT and GET need to be
funded using homogenous patient groups.
Due to such opposite views about CFS any consensus
trying to combine the biomedical view with the
psychosocial view will not benefit patients.
Before one can think of prevention one needs to
understand CFS properly and this requires a correct
We find the strategy of the CDC to be quite lacking
in specificity. It seems to be a vague collection of
notes rather than an integrated, visionary and
comprehensive plan for research into CFS.
It seems odd that the CDC state that they are in
early discussions with pharmaceutical companies to
discuss possible clinical
intervention trials. How can this be possible
without a clear identification of what CFS is?
What must the CDC do? It must define the illness.
This might require segregation of the different sub
groups of CFS which biomedical research has already
uncovered. Using the Canadian Guidelines will help
differentiate the neurological illness (called ME in
The bias toward the psychosocial view of CFS must
end. This has caused untold suffering of patients
and families in the UK and is not acceptable.
Epidemiological studies need to be made but this can
only be done if correct clinical guidelines to
describe the illness are used. There needs to be
urgent biomedical research on the severely ill, bed
bound, housebound patients who have been neglected
so far. The disease process is the clearest among
these patients and to gain understanding of the
disease process these patients need to be included
in research studies.
In summary CFS patients deserve biomedical research
studies using criteria that pick homogenous groups
of patients not forgetting the severely ill
Invest in ME
Registered charity number 1114035
PO Box 561
Eastleigh SO50 0GQ