Following a press conference at the Ritz Hotel in London on Thursday May 28, a number of UK newspapers have been reporting that the cause of ME/CFS has been identified and that a simple home-based diagnostic test for ME/CFS is now commercially available to the general public.
Daily Telegraph story
The urine test is based on the new scientific hypothesis that people with ME/CFS are producing excessive amounts of a chemical called hydrogen sulphide (H2S) and that this abnormality can be measured by a specific urine test (that measures an H2S metabolite/by-product).
The production of excessive amounts of this chemical (which can act as a mitochondrial* poison) is claimed to be due to overgrowth of certain lactate-producing bacteria in the gut (including species of enterococcus and streptococcus). This is coupled with the presence of metal (such as mercury and nickel) intoxication in the body. It is also claimed that the problem in the gut can be successfully treated through changes in diet, probiotics (‘healthy bacteria’) and antibiotics.
The urine test kit, designed for use at home, is only available privately at a basic cost of around £13. This test kit has to be ordered from abroad and is not available on the NHS.
Dr Charles Shepherd, Medical Adviser to the MEA, adds a note of caution:
"I have looked at the scientific information upon which this test is based and heard the presentations from Professor Kenny De Meirleir and Dr Chris Roelant – two of the people involved with this research – at the Invest in ME Conference on Friday 29 May. My conclusion is that while this is an interesting hypothesis, the test itself cannot yet be regarded as a scientifically proven diagnostic test for ME/CFS.
"The urine test needs to be further validated using significant numbers of ME/CFS patients with all degrees of severity and from various other referral centres. The results need to be compared to significant numbers of healthy matched controls, people with other conditions that involve fatigue, and people who are bed-bound or severely affected by other disabling conditions that may affect their nutritional status. The latter point, which was made at the conference on Friday, is particularly important because much of the work so far appears to relate to a severely affected sub-group of ME/CFS patients. The MEA’s Ramsay Research Fund would be willing to consider any such research proposal. The results then need to be published in peer-reviewed medical journals.
"There are also going to be problems if people start using this test and then expect their family doctors/GPs to interpret the results and recommend/prescribe specific treatment, including antibiotics, based on the results. This is because the UK medical profession has not yet received any information about either the underlying hypothesis, or the test, or the treatment recommendations, in their scientific journals.
"Until we have further results from several good quality independent studies, it would be premature to conclude that a significant factor in the causation of ME/CFS has been discovered and that a simple urine test is now available for diagnosing ME/CFS. The recommendations regarding treatment are speculative and need to be subjected to equally rigorous clinical trials before any firm conclusions can be drawn about their general efficacy in ME/CFS."
* Mitochondria are the energy-producing parts of cells.