I might have misheard things, but here’s a brief summary.
He starts by asking the attendees what they know about CFS.
Someone said «lethargy» and another person didn’t think there was much difference between Neurasthenia and CFS. He did suspect that the latter was more acceptable among patients due to not being classified as a psychologial issue.
I have skipped a lot to save energy, but there are some factual mistakes regarding the history of the name and prevalence. He should have said that it’s calles ME/CFS.
Silva makes a point about how the typical patient has had a «catastrophic onset of fatigue», as opposed to gradual.
Silva asks them what the second core symptom is, other than fatigue. The guesses are pain and brain fog. He then says that it’s about «what happens if the patients pushes through». Someone answers insomnia. He says it’s not what he’s looking for, but he tells them about unrefreshing sleep.
Silva then gives a great example of PEM, where he emphasises the delayed onset, severity of disability of it. He says that this is mostly unique to CFS, but that you can see it in some MS patients. He is very clear in the example that the patient wants to do things, and that they enjoy doing them.
He then goes on to give a good description of other symptoms like brainfog, hypersensitivity, OI, POTS, IBS, flu-like, etc.
It seems like he does a good job at explaining how CFS is not CF, and that we’re not dealing with depresses, apathic patients.
Around 35:00, a man in the audience says that he was part of the group that developed the 2007 NICE criteria. He says that the intended to follow the CCC, but that there was a lot of political interference from vested interests, so the 2007 version got watered down.
Silva emphasises that if you’re going to rule out CFS, you need to have something that better explains the whole picture, including PEM. He also says that they need to consider the severity of the disability of e.g. PEM - that menopause can’t explain being bedbound for three days after going shopping one day.
He then goes on to talk about EDS and personality traits(!!) because someone mentioned it. Says that many of his patients were high achievers, a bit obessive, difficult to get them to pace themselves.
Says that chronic Lyme or EBV is not a thing and without any evidence.
Emphasises that CFS patients are not depressed (they can be that too), and that they usually want to do things. They just can’t without getting PEM.
Says that CFS is often triggered by a period of stress followed by an infection or a challenge to the immune system.
There’s a mounting body of evidence that something biological is wrong in these patients. No smoking gun yet.
On treatments: do not give them GET because of PEM. No longer recommended. Pacing is the cornerstone.
Says that pacing is to stay within your energy allowance without triggering PEM. Also says that the patients can increase their activity slowly within what they feel they can cope with. Says that within first five years, there’s a good chance that pacing will lead to improvements. «Whenever you feel that you’ve stabilized, you can try to increase your activity a little bit».
Prognosis: only 1/3 are able to return to work, but they might need adjustments. Most improvements happens within 5 years.
