DRAFT CFS Strategic Research Plan General Outline

Invest in ME have responded to the Centres for Disease Control Draft CFS (ME) Strategic Research Plan

Below is the letter submitted to the CDC on 1st May 2009



Dear CDC,

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 G93.3.

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 results.

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 definition.

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 UK).

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 patients.

Invest in ME
Registered charity number 1114035
PO Box 561
Eastleigh SO50 0GQ


Last Updated: 05/05/2009