by Sasha Nimmo and artwork by Peta Manning
Here is a template letter to send to the National Health and Medical Health Council. Please add any questions you have!
You can email your letter to firstname.lastname@example.org or you can post it to Level 1, 16 Marcus Clarke Street, Canberra ACT 2601.
Dear Prof Kelso,
I’m one of the 94,000-242,000 Australians with Myalgic Encephalomyelitis (ME), as it affects between 0.4% and 1% of the population. There are even more of us, perhaps up to 400,000 who fit into the wider criteria of chronic fatigue syndrome (CFS). I’m very disappointed that Australia has not funded a study into chronic fatigue syndrome for more than a decade. (you may wish to insert something about your personal circumstances and how a lack of research has harmed you.)
- When will you be making a Targeted Call for Research for ME so we get equitable funding for this extremely debilitating illness?
- As there are no current clinical guidelines, will you use the more recent International Consensus Criteria for M.E.? Australian experts were consulted and had input into the development of these criteria. It is endorsed by the South Australian, ACT, Victorian, Tasmanian, Northern Territory and New South Wales patient associations.
- Who conducts your peer reviews for ME and CFS grant applications?
- When evaluating submissions, will you be consulting experts working in this field? Will you contact patient groups such as Emerge Australia and seek their input, or patients directly?
I hold concerns that there are still a small number of advocates for ineffective and potentially dangerous therapies such as graded exercise therapy (GET) and cognitive behavioural therapies (CBT). The data released from a trial of these therapies shows no benefit over standard medical care. Please do not fund any more of these studies or use experts who advocate for them, at the expense of treatments that may help us. Please fund promising research into immune, microbiome, neurological and relevant fields.
Emerge Australia’s president said “there is no good evidence to support the use of graded exercise therapy or cognitive behavioural therapy and there is important emerging evidence on genetic and immune markers for the condition, so we ask the Department of Health not to waste precious research dollars on those studies.”
The UK’s ME Association said “the largest and most recent survey of patient evidence on the acceptability, efficacy, and safety of CBT, GET, and pacing was carried out by The ME Association and involved 1428 respondents. In this case, 73% of respondents reported that CBT had no effect on their symptoms and 74% that their symptoms were made worse by GET”.
6. Could Australia contribute to the global effort by contributing resources to international studies?
Australia’s Griffith University have just patented a diagnostic blood test. Overseas, trials from Norway are showing that rituximab may be a useful treatment.
7. Will the NHMRC encourage scientists to replicate these studies here so that if the drug is found to be effective, Australian patients can have access to it?
I would also welcome any suggestions as to what patients can do to support much-needed research into this field.
A systematic review of studies indicated that only 5% of patients recover or go into remission, so most of us need medical research to progress to find treatments.
Thank you for your attention to this important matter and I look forward to hearing from you.