Ok - so this is probably going to make me unpopular, but I just watched his whole video. I found him to sound quite reasonable. I didn't agree 100% with every statement, but the take home for me was:
1) ME is a real illness
2) It is medically unexplained, despite certain patterns, and there is no single test
3) Definitive diagnosis can be made by an informed clinician who knows what to look for, and other diagnoses should be excluded
4) It has severe effects on the patients and causes real disability
5) Be open minded
6) Like any disease, the hard line between psych and physio goes against everything we understand about the human body
7) It is logical to use psychological approaches to help patients just as it is logical to do so in cases of cancer and RA
8) Medications offer symptomatic benefit but cannot cure ME
9) CBT / GET is controversial but may offer benefits
10) Patients with ME do not respond well to antidepressants, while the depressed patients misdiagnosed as having ME respond quite well
11) Every new symptom must be evaluated as ME patients can get other illnesses
I have a hard time really disagreeing with those statements. I find him open minded and I like that he admits the limits of our knowledge. He strikes me as sympathetic and generally wishing to improve the quality of life for his patients. I wish most docs were this good. I've only found a handful that are this sympathetic to us. Most just want to push us out the door.
I'm grateful for a doctor who will look me in the eye and say, "You have ME. Unfortunately, we don't understand what the cause is and we can't cure it. I can help you manage symptoms and cope, and I recognize this has and will have a severe impact on your life. Some patients find that psychological support for chronic diseases is helpful."
There's nothing there that is offensive to me. I have a close family member with a very clear medical problem that is generally considered to be uniformly terminal - and at a very early age (34). She does get psych support for her illness. No one claims it can fix the illness, but having a chronic illness evokes secondary depression and anxiety and is injurious to one's psychological health. I think most of us here would agree that we suffer from the problem of not being happy much of the time because we are sick. Well, if we can't fix the sick part yet, might as well try to fix the happy part.
I live in the US, and here, we don't really see a push for using CBT to cure us of "false illness beliefs." Doctors here mostly just want to get you out of the office as fast as they can because they don't really think they can help you (or don't believe ME is real) - but we also don't have the same problems UK patients have with access to care. I have no gatekeeper - i.e. my PCP does not need to consent for me to see any other doc I choose. If the doc is in network for my PPO, it's covered. Sometimes docs at major medical centers only accept physician referrals, but it's not a money thing, it's that they are busy and only want patients who other docs feel they might be able to help. I think CBT to help with illness coping is a good thing. CBT to cure "false illness beliefs" is offensive - but I didn't see him promoting that. If he does (still?) promote that, then I'd take issue with that.
I understand the strong desire to disavow any psychological involvement in ME. However, I'll come right out and admit here that since becoming sick, I've often been depressed because of all I have lost in my life. I look at my extremely successful peers and feel inadequate by comparison, and even though I know that the illness is the root of it, I still feel bad about myself. I feel more anxious because I have more unexplained symptoms than my well friends. These are not the cause of my ME, they are a result of it. It should not be something we are embarrassed to admit. It's normal. Cancer patients, RA patients, MS patients, AIDS patients - they all have secondary psych problems. If we deny it, we are saying we don't have that severe an illness. I get that it comes out of the Wesseley assault on our integrity, blaming us and saying everything is in our head, so we feel that denying anything psych is necessary to disprove Wesseley et al. Even he seems to be coming around though...
If I had to nitpick one problem with his talk, I would have liked for him to mention that while CBT is probably harmless (depending on the content), GET may cause patients harm. However, my ME doc, a very well respected and extremely ME-friendly doc who is frequently mentioned on these forums has mentioned GET to me as a potential therapy. He told me to figure out what I felt good doing that, and then do 75% of that. If I felt worse, stop, recover, and restart at a lower level. If I felt good, slowly increase. He said he thinks it helps some in some patients, but he doesn't think it's a cure or anything close, but it's worth trying.
I'd rather focus our ire on the really bad docs, the ones who have really hurt us. Dr. Miller does not strike me as such a man. Perhaps there is more to it than I am getting. I only just heard of him and watched a 45 minute talk. He is exhibiting professional, scientific skepticism, which is not a bad thing. He's no Simon Wessely.
And furthermore, anyone who is criticizing Julia Newton, please don't! She is one of the best researchers out there in ME. She isn't saying our fatigue is like other fatigue - she's asking the question about what fatigue means. She isn't an ME patient, and she doesn't know - so she's trying to use science to answer that question, and I find her intellect, openmindedness, and compassion inspiring. I have absolutely no criticisms of Dr. Newton at all whatsoever.
Remember, even just getting up and talking about ME, specializing in ME, and saying it's real gets you made fun of and ostracized by your peers. It can be professional suicide. Let's support any and every doc who acknowledges we have a real disease and that something is wrong, and that they, as a profession, have a duty to try to help us. Also keep in mind that these docs are the bridge between us and the rest of the medical community. People like Dr.
@Jonathan Edwards sometimes upset people on this forum by pointing out when things are not scientific. This includes things I say or post! I welcome all intellectually honest, scientifically based criticisms. By staying scientific, these doctors can help bring the rest of their profession into the realization that ME is a real and serious and patients are not crazy.
I for one would like to thank all the doctors out there who go out on a limb for us, who proclaim to the world that ME is real and that it's ruining lives, and that we should use real science to solve it. I would like to thank the kind PCP's who, even though they don't understand us at all, believe us, listen to us, treat us with kindness, and do what they can to help manage symptoms.
We have enemies out there. Let's not turn our ire on those who are not our enemies.
