Flawed Research from a Flawed Approach
The Bristol University press release headline
1 in 50 16-year-olds affected by chronic fatigue syndrome
seems to be at odds with the actual research paper [http://pediatrics.aappublications.org/content/early/2016/01/22/peds.2015-3434]
The research paper states
“The children in this population-based study were not assessed by a doctor, and our 347 classification was not subject to clinical verification. It is therefore possible that parents and 348 children reported significant levels of disabling fatigue which was caused by another 349 disorder. The most likely alternative diagnosis in this group is depression.”
They have found that children are more fatigued ( parent- or self-reported) at age 13 and 16 but they have not confirmed that those children have CFS or ME. The reasons for this fatigue could be almost anything ranging from poor diet to just being a teenager or having an unidentified medical illness as the children were not formally assessed.
“Even after excluding depressive symptoms, CFS was more common in our population cohort 387 compared to a Dutch study which relied on medical diagnosis, and which reported a prevalence of 0.11%. 13 388 This discrepancy might be a consequence of the limitations of our 389 methods for classifying CFS, but it could also have occurred because not all children with CFS visit their doctor, or visit a doctor but are not diagnosed or offered treatment. 2”
“Further research is also 400 needed to investigate the extent to which psychological problems and life difficulties pre-date or follow CFS.45 401 This aspect of adolescent CFS, in particular the role of depression, requires 402 in-depth analysis using repeated measures of mood and fatigue from childhood through to 403 early adulthood.”
Further research into mood and life difficulties in children who miss half a day of school here and there is fine as long as the researchers do not claim to be studying ME or CFS and thus using scarce ME related research funds in this way.
Investin ME Research was formed partly because children that were happy and healthy before being diagnosed
with ME were being ignored and all attention was given to everything else but the core illness of ME.
Children with ME often have to drop out of school altogether instead of missing half a day here and there.
We need to speak out for these children and their needs to understand ME.
These children may be a subgroup of a big "fatigue tent" but they have been in that tent for too long without having been singled out as a group to be worthy of being studied as a well -defined group on their own.
In fact we are totally sick of hearing about being in a "tent" of any sort - it is an epithet for a lack of transparency and intent and hides the real reasons why no progress has been made.
It is extremely irresponsible for the authors not to be accurate in their press release as there are children with ME who are just ill with no fault of their own or their families’ and they need not to be stigmatised with inaccurate reporting and headlines.
A final thought.
This bogus research was funded by the MRC and is a continuing illustration of the failure of the MRC to deal with ME and to conduct the required research.
With no strategy and no attempt to treat this disease with any sense of urgency then the result has been a collossal scandal regarding ME research.
All of those who have taken part in years and years of MRC expert panels and the follow-on spin-offs have failed.
This research shows we are as far away as ever of having any hope of theMRC really dealing with this disease.
Words of what will be done are meaningless when actual funding is given instead to irrevelances such as this.
images from The Right Stuff - distributed by Warner Brothers