Thanks to everyone involved in having Dr Lapp come to NZ and to Sandra for organising the radio interview. I couldn't get to Dr Lapp's talks so I was very interested to hear what he has to say this morning on the Nine to Noon programme.
I think it was useful. Clearly Dr Lapp's aim was to get the message across that the disease is not psychological. He won't have convinced those who strongly believe that is, but he may have given others cause for thought. I made some notes and will record them here. They aren't word for word, just the gist of things. Words in < > are broad summaries. Words in italics are my comments.
Presenter: For a long time the medical profession has been sceptical about CFS.
Lapp: And they remain sceptical. That's one of the reasons why I'm travelling around NZ. There is now lots of evidence that it isn't psychological.
Presenter: I remember there was some thought that the immune system is going into overdrive after something like glandular fever and staying in that heightened state.
Lapp: Yes, the immune system is upregulated in one part and downregulated in another. It's like a car with the accelerator pressed down but the brake on.
It's a systemic disease, many parts of the body affected. <NIH, IOM report mentioned > - it concluded a better name is Systemic Exertion Intolerance Disease. <Exertion intolerance explained>
Presenter: Is there any biomarker?
Lapp: no marker but there are tests that are suggestive, can confirm a diagnosis
Sees spots on the brain in MRIs of 80% of patients; cerebral blood flow decreased
Presenter: Treatment?
Lapp: Just management of symptoms at this point. We don't have a known cause. <explained symptoms>. We treat the pain and sleep problems. <explained PEM> If they try to push through the fatigue, they end up in bed for two or three days. (perhaps an opportunity lost to explain how debilitating the disease is, to mention what it's like for people with severe ME)
We see myoclonus, jerking, in patients and terrible nightmares (really?, I'm sure some patients have these but I wouldn't have thought they were a defining feature. My family hasn't had terrible nightmares. In fact I think I didn't have or at least recall dreams at all in the first year. I don't think the highlighting of that symptom in particular was helpful in the aim to suggest the disease isn't psychological.)
Patients never wake up feeling refreshed.
Presenter: Are patients in a hypometabolic state?
Lapp: That's a current hypothesis proposed by Naviaux. Patients are conserving energy, patients may be protecting themselves against damage, either real or anticipated. (this was slightly unhelpful I think - saying that the patients are doing this rather than their cells).
<Explanation of multi-site study, funded by CDC. Several groups of CFS physicians, longitudinal study of patients. Blood, exercise and cognitive studies. Trying to determine the best way to examine patients, the best surveys. This is important as the symptoms are mostly subjective.
Presenter: What is the relationship between fibromyalgia and CFS. Fibromyalgia is a form of arthritis, is it not?
Lapp: The diseases are very similar. When pain is a major symptom, we call it fibromyalgia. When fatigue is a major symptom, we call it CFS. In fibromyalgia there is a substance in the muscles that makes the patients feel pain more than healthy people. Fibromyalgia is not arthritis, the pain is not in the joints.
Presenter: How widespread is the disease?
Lapp: very widespread. GP's will be seeing these patients. But you have to be looking for it, it is mostly missed. People can go three or four years before they are diagnosed. There's nothing worse than knowing you are sick and not having that recognised. It's not an obvious disease, you can't tell just by looking at someone. It's not psychological.
Presenter: Drug treatments?
Lapp: very positive time for people with CFS. We've been studying Ampligen, so far that isn't approved. Norwegian studies - two oncologists found that a chemotherapy drug improved both the lymphomas that they were treating but also the CFS that some of their patients had. Rituximab. Studies are ongoing to explain why a chemotherapy drug works for CFS. People with CFS have high levels of TNF-alpha. We are looking at drugs to reduce this - these drugs are used to treat arthritis and ulcerative colitis. Hopeful that there are drugs that will help.
Presenter: What about neuroplasticity? looking at things differently? (not sure I got the exact words here) I don't want to suggest it's psychological but can some of these therapies help?
Lapp: I'm not aware of any of that type of therapy that might be helpful that are particularly well studied.
END
ok, so this is me back again. I think it is unfortunately difficult to sound credible when talking about ME/CFS as a biomedical disease. It will stay difficult until there are very clear biomarkers. But Dr Lapp did a good job and the interview certainly makes a positive contribution to the public having a useful understanding of the disease.