It was only a week since I saw Dr TL last time. But it felt much longer… There were a few things happened during the week. I was hoping I could report everything and I could ask all questions. This self imposed pressure may have made my mind go very hyperactive. I could have talked more, but I don’t think I made sense out of my thoughts.
Dr TL asked about the research info session. He thought my blood had already taken. I explained it didn’t happen. I had to fill a questionnaire and am waiting to see if they select me or not. I told him I don’t think I would be selected because I feel I’m too ill for the research, and other attendants were not as sick as I am. We acknowledged that different severity seems like different condition all together.
I asked if he knew about Dr Staines. He hadn’t met him yet, but he had spoken with him over the phone. He had a favourable view about Dr Staines, and was surprised that he was publishing papers.
I explained about Dr Staines’ hypothesis and the research was designed to prove it and invent diagnostic kit. He was impressed, and commented that Dr Staines must be a very busy man.
We talked about touchy subject on GPs knowledge about ME/CFS.
He explained about the difficult situation of catching up with the knowledge as a GPs’ point of view. I understand very well that GPs have to keep up with information for all sorts of illnesses and conditions. It is time consuming commitment. And I admire their efforts in order to help fellow human beings.
I expressed my opinion how ignorance could harm patients from the patient’s point of view. There is no basic universal and agreeable information about ME/CFS and it seems each GP can decide if they believe it or not. I’m very lucky because my current GP is extremely motivated to help his patients. But it is true that my previous GP harmed my health gravely with his arrogance and ignorance… I once asked him which part of my symptoms did he believe belong to depression. He could only point out “fatigue”… He was angry that I challenged him but told me fatigue can be only symptom of depression. I couldn’t find any paper that supports his view.
We talked what is “harm”. Dr TL believes not accepting patient or refuse treatment is harm. I slightly disagreed. I’d rather feel that refusing a patient because the GP doesn’t have enough knowledge or understanding (and not willing to treat) is being honest, and I don’t feel it is causing a harm to a patient. (At this point, the sufferer is not the GP’s patient yet.) I would appreciate the honesty. On the other hand, giving a harmful treatment to a patient and let the patient’s health deteriorate and doesn’t care about it is the harm. Dr TL commented that is the time to change a doctor.
I felt from my personal experience that things may not be that simple. Patients may not aware that a GP may not have enough knowledge to treat a certain condition. It would go against the public trust, wouldn’t it? The patient with complicated and stigmatised condition may have already changed doctors and are not willing to change a doctor light heartedly.
My case also had pressure from in-laws, and they didn’t allow me to change the doctor or fire one… They didn’t accept the doctor cannot help me and he didn’t listen to me. They manipulated me and pressured me to go back to the doctor who was harming me. When I finally decided enough was enough, my relationship with the in-laws went sour.
Anyway, Dr TL has the point. I should have looked for other doctor before it was too late. I told him that I was taking it too personally. And I withdrew from the discussion as I didn’t feel I could express a fair view. (I still strongly wish I didn’t trust the previous GP so that my life had much better chance of being normal now.) Dr TL and I were discussing on the issue as a general point of view, neither of us were accusing each other personally.
We went back on discussion over psychiatrists and mental illness. (He is very careful about psychiatrists because he witnessed a psychiatrist diagnosed a dead body with severe depression.) We also touched on the lovely message Dr TL shared with us. I expressed not all psychiatrists and psychologists are bad, just in case he might think I’m a shrink hater. I acknowledged there are good ones out there. They recognise ME/CFS is physical condition and they acknowledge they cannot treat it. However, they recognise many of us need counselling to cope with the illness/limitations and grief from loss of life/abilities.
But the horrible ones seems to have power and control.
Dr TL told me he also left the message on online article. He felt our frustration and thought a doctor’s opinion could change the tide. Later he revised it. If you are interested in, you can find it here. And the revised comment is;
revision: Simon Wesley’s position is not about medical truth and patient well being. I am a Doctor. He is a Psychiatrist. He cannot examine people for medical conditions. He could not diagnose or treat asthma. His position is about ownership of the disease. Declaring these illness Psychiatric in their entirety he then owns them and this makes him a very important man. If he were persuaded that medical issues that are beyond his grasp play a role then he immediately becomes irrelevant. He knows nothing of any medical diseases. He has a symbiotic relationship with insurance companies and government. He receive glory and they save money
I’m privileged to have a doctor who has the depth of understanding of politics surrounding the illness.
Currently, the big news is about Non Guilty verdict on Kay Gilderdale’s case. Dr TL showed genuine interest in the topic, and we had another long discussion about it. I’ll write about it in separate entry.
Dr TL asked how my breathing was. I didn’t realised that I was out of breath until he asked me. He listened to my chest and checked pulse.
We tried PFM. He gave me detailed instruction again, and a reasonable target. I didn’t perform that well. After the third try, he realised I couldn’t do any better. But he complimented that I was still producing good result. We were also happy about the consistent reading because sometimes I could only make one good reading and others are bad.
He copied the PFM from home and asked about exercises.
I explained I was still having a break from it. It’s been a while since I had flare up and am having a big payback. But I’m willing to start it again as soon as I feel it is time.
I mentioned Celebrex is helping. He gave me prescription for Naproxen SR as he believes it would help me better. He advised to wait for Celebrex to finish, then switch to Naproxen SR. He suggested that Dr Staines’ hypothesis may be right because of the the fact anti-inflammatory medicine is helping me. That was an interesting opinion.
During the meeting, we made fun of Dr TL’s ego. He felt it was bad… I disagree. There are two types of egos, one tries to control people, the other motivates self to achieve high. His ego is a healthy one. And if he didn’t have it, he didn’t find treatments for me, and he wouldn’t be a doctor to start with. So, I’m happy that he has his ego.
My mind was hyped up with all discussions and stimulation. While we were saying good-bye, we kept chatting about Dr Staines… (Only good thing.)
Dr TL is still my favourite doctor because he is in front line and treating us with compassion.
It was only a week since I saw Dr TL last time. But it felt much longer… There were a few things happened during the week. I was hoping I could report everything and I could ask all questions. This self imposed pressure may have made my mind go very hyperactive. I could have talked more, but I don’t think I made sense out of my thoughts.
Dr TL asked about the research info session. He thought my blood had already taken. I explained it didn’t happen. I had to fill a questionnaire and am waiting to see if they select me or not. I told him I don’t think I would be selected because I feel I’m too ill for the research, and other attendants were not as sick as I am. We acknowledged that different severity seems like different condition all together.
I asked if he knew about Dr Staines. He hadn’t met him yet, but he had spoken with him over the phone. He had a favourable view about Dr Staines, and was surprised that he was publishing papers.
I explained about Dr Staines’ hypothesis and the research was designed to prove it and invent diagnostic kit. He was impressed, and commented that Dr Staines must be a very busy man.
We talked about touchy subject on GPs knowledge about ME/CFS.
He explained about the difficult situation of catching up with the knowledge as a GPs’ point of view. I understand very well that GPs have to keep up with information for all sorts of illnesses and conditions. It is time consuming commitment. And I admire their efforts in order to help fellow human beings.
I expressed my opinion how ignorance could harm patients from the patient’s point of view. There is no basic universal and agreeable information about ME/CFS and it seems each GP can decide if they believe it or not. I’m very lucky because my current GP is extremely motivated to help his patients. But it is true that my previous GP harmed my health gravely with his arrogance and ignorance… I once asked him which part of my symptoms did he believe belong to depression. He could only point out “fatigue”… He was angry that I challenged him but told me fatigue can be only symptom of depression. I couldn’t find any paper that supports his view.
We talked what is “harm”. Dr TL believes not accepting patient or refuse treatment is harm. I slightly disagreed. I’d rather feel that refusing a patient because the GP doesn’t have enough knowledge or understanding (and not willing to treat) is being honest, and I don’t feel it is causing a harm to a patient. (At this point, the sufferer is not the GP’s patient yet.) I would appreciate the honesty. On the other hand, giving a harmful treatment to a patient and let the patient’s health deteriorate and doesn’t care about it is the harm. Dr TL commented that is the time to change a doctor.
I felt from my personal experience that things may not be that simple. Patients may not aware that a GP may not have enough knowledge to treat a certain condition. It would go against the public trust, wouldn’t it? The patient with complicated and stigmatised condition may have already changed doctors and are not willing to change a doctor light heartedly.
My case also had pressure from in-laws, and they didn’t allow me to change the doctor or fire one… They didn’t accept the doctor cannot help me and he didn’t listen to me. They manipulated me and pressured me to go back to the doctor who was harming me. When I finally decided enough was enough, my relationship with the in-laws went sour.
Anyway, Dr TL has the point. I should have looked for other doctor before it was too late. I told him that I was taking it too personally. And I withdrew from the discussion as I didn’t feel I could express a fair view. (I still strongly wish I didn’t trust the previous GP so that my life had much better chance of being normal now.) Dr TL and I were discussing on the issue as a general point of view, neither of us were accusing each other personally.
We went back on discussion over psychiatrists and mental illness. (He is very careful about psychiatrists because he witnessed a psychiatrist diagnosed a dead body with severe depression.) We also touched on the lovely message Dr TL shared with us. I expressed not all psychiatrists and psychologists are bad, just in case he might think I’m a shrink hater. I acknowledged there are good ones out there. They recognise ME/CFS is physical condition and they acknowledge they cannot treat it. However, they recognise many of us need counselling to cope with the illness/limitations and grief from loss of life/abilities.
But the horrible ones seems to have power and control.
Dr TL told me he also left the message on online article. He felt our frustration and thought a doctor’s opinion could change the tide. Later he revised it. If you are interested in, you can find it here. And the revised comment is;
I’m privileged to have a doctor who has the depth of understanding of politics surrounding the illness.
Currently, the big news is about Non Guilty verdict on Kay Gilderdale’s case. Dr TL showed genuine interest in the topic, and we had another long discussion about it. I’ll write about it in separate entry.
Dr TL asked how my breathing was. I didn’t realised that I was out of breath until he asked me. He listened to my chest and checked pulse.
We tried PFM. He gave me detailed instruction again, and a reasonable target. I didn’t perform that well. After the third try, he realised I couldn’t do any better. But he complimented that I was still producing good result. We were also happy about the consistent reading because sometimes I could only make one good reading and others are bad.
He copied the PFM from home and asked about exercises.
I explained I was still having a break from it. It’s been a while since I had flare up and am having a big payback. But I’m willing to start it again as soon as I feel it is time.
I mentioned Celebrex is helping. He gave me prescription for Naproxen SR as he believes it would help me better. He advised to wait for Celebrex to finish, then switch to Naproxen SR. He suggested that Dr Staines’ hypothesis may be right because of the the fact anti-inflammatory medicine is helping me. That was an interesting opinion.
During the meeting, we made fun of Dr TL’s ego. He felt it was bad… I disagree. There are two types of egos, one tries to control people, the other motivates self to achieve high. His ego is a healthy one. And if he didn’t have it, he didn’t find treatments for me, and he wouldn’t be a doctor to start with. So, I’m happy that he has his ego.
My mind was hyped up with all discussions and stimulation. While we were saying good-bye, we kept chatting about Dr Staines… (Only good thing.)
Dr TL is still my favourite doctor because he is in front line and treating us with compassion.