Robin Kerr is the only doctor currently.
1 nurse
1 admin person
1 doctor
2 physiotherapists
5 counsellors
3 chaplains
Possibly that mix isn't terrible - counselling and religious support from people familiar with ME/CFS could be important services that aren't being well provided by other organisations. But, it's not great for a service aiming to provide medical support.
Nina Muirhead and Roin Kerr presented a webinar 'Learn about ME' about a year ago. Robin Kerr seems very caring and certainly convinced the illness is biological. Unfortunately, he presents things like CPETs and findings of high lactate as proof of the pathophysiology, and I don't think we can be so sure about that. He says things like 'people with higher lactate levels at rest are more likely to get more severe symptom exacerbation if you push them to do things'. He wheels out the Krebs cycle. He talks about the Systrom reports of peripheral oxygen extraction restrictions, and about endothelial damage. He wraps it all up and ties it with a bow - but I don't think the situation is nearly as resolved as he suggests.
So far, it is the sort of stuff that someone who has read some papers but hasn't read enough to start to wonder how much is true might think. Maybe not super harmful - the doctors can feel as though they understand something and at least they aren't thinking it's all psychological. However, what about the people who don't have high lactate when you measure it (people like me) - is it fine to 'push them to do things' because the paper suggests that they are not so likely to get symptom exacerbation? Should we conclude that people without high lactate at rest don't have ME/CFS?
He mentions micro clots, mast cell activation, too much fight or flight sympathetic activation because the parasympathetic nerves go deeper into the endothelium and so are more affected by the endothelial inflammation. He says 'there's inflammation, there's always been inflammation, the clue's in the name' - 'itis' in myalgic encephalomyelitis'.
Symptom management
'These are some of the things that I do in general practice and that I feel comfortable doing. I realise that if this is new and unfamiliar, it might not feel entirely comfortable to you.'
Praises the Bateman Horne Center - 'one of the great places to treat ME, in the US'. We know that simply is not true, and it's concerning to hear a doctor say that.
Mentions the NASA lean test, mentions fluids, salt. A lot about POTS. He seems to equate autonomic dysfunction with POTS. I don't think I heard 'orthostatic intolerance' being mentioned. He says bisoprolol (a beta-blocker) can be life-changing for some people - and maybe it is.
There's a slide on MCAS. He treats with anti-histamines. He talks about a London study of Long Covid patients where 20% reported symptomatic resolution when they were given both H1 and H2 receptor antagonists e.g. loratadine and famotidine, and 52% reported some improvement. Here's the thread - we haven't discussed it there. There's some discussion on a thread looking at the evidence for histamine being part of the ME/CFS problem. It is an observational study with self-reports. Dr Kerr didn't mention that the reports are therefore unreliable.
I don't think Dr Robin Kerr is terrible, or a lost cause. His heart is in the right place, he clearly wants and likes to help. But, he needs to spend time here, or somewhere else where ideas are challenged, somewhere where he doesn't get to be the one dispensing wisdom to grateful patients and clinicians all of the time.
Who exactly in AfME is making sure that their medical staff are well-informed, making sure that the treatments used in the clinic are eventually subject to sound trials? Nina Muirhead has roles in doctor education, and she seemed to be completely on board with what Robin Kerr was presenting. So, I'm not sure where the good information that convinces AfME officers to do better is going to come from. I think the Trustees of AfME should be concerned - their clinical service is a reputational risk.
...some edits to fix typos
1 nurse
1 admin person
1 doctor
2 physiotherapists
5 counsellors
3 chaplains
Possibly that mix isn't terrible - counselling and religious support from people familiar with ME/CFS could be important services that aren't being well provided by other organisations. But, it's not great for a service aiming to provide medical support.
Nina Muirhead and Roin Kerr presented a webinar 'Learn about ME' about a year ago. Robin Kerr seems very caring and certainly convinced the illness is biological. Unfortunately, he presents things like CPETs and findings of high lactate as proof of the pathophysiology, and I don't think we can be so sure about that. He says things like 'people with higher lactate levels at rest are more likely to get more severe symptom exacerbation if you push them to do things'. He wheels out the Krebs cycle. He talks about the Systrom reports of peripheral oxygen extraction restrictions, and about endothelial damage. He wraps it all up and ties it with a bow - but I don't think the situation is nearly as resolved as he suggests.
So far, it is the sort of stuff that someone who has read some papers but hasn't read enough to start to wonder how much is true might think. Maybe not super harmful - the doctors can feel as though they understand something and at least they aren't thinking it's all psychological. However, what about the people who don't have high lactate when you measure it (people like me) - is it fine to 'push them to do things' because the paper suggests that they are not so likely to get symptom exacerbation? Should we conclude that people without high lactate at rest don't have ME/CFS?
He mentions micro clots, mast cell activation, too much fight or flight sympathetic activation because the parasympathetic nerves go deeper into the endothelium and so are more affected by the endothelial inflammation. He says 'there's inflammation, there's always been inflammation, the clue's in the name' - 'itis' in myalgic encephalomyelitis'.
Symptom management
'These are some of the things that I do in general practice and that I feel comfortable doing. I realise that if this is new and unfamiliar, it might not feel entirely comfortable to you.'
Praises the Bateman Horne Center - 'one of the great places to treat ME, in the US'. We know that simply is not true, and it's concerning to hear a doctor say that.
Mentions the NASA lean test, mentions fluids, salt. A lot about POTS. He seems to equate autonomic dysfunction with POTS. I don't think I heard 'orthostatic intolerance' being mentioned. He says bisoprolol (a beta-blocker) can be life-changing for some people - and maybe it is.
There's a slide on MCAS. He treats with anti-histamines. He talks about a London study of Long Covid patients where 20% reported symptomatic resolution when they were given both H1 and H2 receptor antagonists e.g. loratadine and famotidine, and 52% reported some improvement. Here's the thread - we haven't discussed it there. There's some discussion on a thread looking at the evidence for histamine being part of the ME/CFS problem. It is an observational study with self-reports. Dr Kerr didn't mention that the reports are therefore unreliable.
I don't think Dr Robin Kerr is terrible, or a lost cause. His heart is in the right place, he clearly wants and likes to help. But, he needs to spend time here, or somewhere else where ideas are challenged, somewhere where he doesn't get to be the one dispensing wisdom to grateful patients and clinicians all of the time.
Who exactly in AfME is making sure that their medical staff are well-informed, making sure that the treatments used in the clinic are eventually subject to sound trials? Nina Muirhead has roles in doctor education, and she seemed to be completely on board with what Robin Kerr was presenting. So, I'm not sure where the good information that convinces AfME officers to do better is going to come from. I think the Trustees of AfME should be concerned - their clinical service is a reputational risk.
...some edits to fix typos
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