The problem with this statement is, if it's easily available for patients with lymphoma, and in rheumatology, and if governments and insurance companies approve if for these conditions, if it's deemed appropriate and indicated for patients with ME who might actually return to their productive and thriving living, then why is "very expensive drug" a problem? Why are patients with ME not worthy of a treatment that has 2 chances out of 3 to be successful? It is better than lottery!
There are therapies out there which cost much more, for intance the new drugs for Hepatite C, for which my government approved last month.
We are worth the investment. And please leave it to patients to decide whether the potential side effects are worth the risk. An informed decision as part of the consent to treatment is important. Patients ned to read the 'fine print'.
At the local clinic, the bio-psycho-social approach reigns. Definitely, this is a cheaper model than offering treatments like Ampligen, Valcyte, IVIg and Rituximab.
Food for thought. we are worthy of serious medical treatments.
Kati
The very basic point I was making in this short MEA press statement, certainly in relation to the future possible use of Rituximab as a treatment for ME/CFS here in the UK, is that this is an expensive drug in relation to most drugs that doctors prescribe on the NHS and it does have a potential to cause serious side effects - although it appears to be generally well tolerated by those involved in the Norwegian clinical trials.
So as far as the UK is concerned, the bodies that license medicines and recommend their use in specific conditions (ie NICE) will need good quality replicated evidence relating to both efficacy and safety from some large multicentre (phase 3) clinical trials before people with ME/CFS could have access to Rituximab.
Large scale phase 3 trials are very costly to set up and in the case of Rituximab, where evidence on longer term maintainance treatment would also be required, this means that from start to finish and publication of results you may well be looking at three years.
So I think we need to be persuading someone who could afford to fund a decent phase 3 clinical trial to do so here in the UK....sooner rather than later and certainly before late 2017/early 2018 when we will hopefully have the results of the phase 3 Norwegian trial that is now in progress.
And if we have the whole spectrum of medical opinion on board here, including the psychiatrists, then the prospect of setting up a phase 3 trial here in the UK does look far more encouraging.
If this doesn't happen, it could well be 2020 before people in the UK start to benefit from the first effective form of drug treatment aimed at the underlying disease process in ME/CFS,