It is upsetting me too. I never had fatigue at all for the first 6 years and even now I just suddenly stop. But there were weird neurological symptoms, no temperature regulation and lots of pain.
I had summer flu: being well one day, forced to stay in bed for the next few days then fifty four...
I have used a fitbit for years and never felt ashamed of how much/little I can do. It is a good tool which suits me.
Some days I do not realise how much I have done so it helps me know to rest. I like the sleep notifications and heart rate function.
It is the medical profession and other...
We have to remember that PEM is a concept introduced by the same people who gave us CFS as a name for a disease that required 6 months before it could be diagnosed despite the fact they were called in to investigate an epidemic where the patients went from well to ill overnight.
Originally, ME...
It is one thing to classify FND as rooted in brain dysfunction caused by changes as a result of childhood adversity then say it can be treated by CBT. We know they are wrong but maybe they believe it.
But to then say that CBT is successful when they get a slight improvement in anxiety about the...
I might be missing it, but it does not say how they collected the results so I presume it was the usual questionnaires.
no matter how the outcomes were measured, unless they are completely objective the results are just as likely to reflect how psychological treatments change the way people...
There appears to have been a lot of work done on making the diagnosis of FND palatable to patients and it has paid off. It is not unusual on forums nowadays to have patients saying they have finally found out what is wrong with them - FND which is a real disease where the hardware is intact but...
These comments from 1974, which use the term "virus" disparagingly, are obviously the near point where infectious diseases went from being a medical breakthrough to being almost a myth that only a bad doctor would believe in. The modern, knowledgeable doctor was too intellectual for that.
The...
It could easily be that if the only treatment is CBT the patient's disease worsens. If you consider asthma being reclassified as behavioural - as it has been at times - only treating it with CBT would lead to patients having more hospital admissions for chest infections.
When someone is...
Remission in MS during pregnancy is said to be due to the immune system being supressed to protect the foreign body that is the foetus.
Though the people I know are not the sickest, obviously, fatigue in MS doesn't seem to be like ours. When people have spoke about it, it is more like tired all...
As a complete non expert who has read a lot :) I think all this is complicated by the individual's biochemistry. A very large study of the lean offspring of type 2 diabetics found that they had different way of processing fats and glucose. This matches the fact that diabetes is a particular...
I would like to know what evidence he has to say that enteroviruses do not cause ME. There was research done in Scotland years ago and the doctor who did it gave a talk to a small group of us. He more or less said that enteroviruses did not cause ME because they were so common there would be...
Dr Lily Chu investigated PEM. She found that illness controls and healthy controls had problems after exertion that matched what they had done. In ME people they experienced inflammatory symptoms like, well, malaise or a flu like feeling as well as sore throats, swollen lymph glands and all the...
Sometimes I get what I might call brain fog where I have trouble thinking and processing and being bit slow, but it is more usual to get a full stop in thinking in the same way I get a full stop in moving. I don't think this is what they mean in other illnesses.
I have heard people talk about...
In the early days with the "New Wine in Old Bottles" it was either published or summarised in the ME Association magazine "Perspectives". He was part of the ME world, though a new voice and his work was shocking and maddening.
So he was not naive. He knew all about the biomedical aspects of ME...
I like the way it says that you have to be careful with CFS, though ME or ME/CFS would have been better so it makes me wonder if they know enough about us. It is an uphill struggle but a promising first step.
Interesting.
Squeezy, I never took anything like hormone replacement as I felt my ME was worse when I was taking a contraceptive.
However, I have taken clonidine to help my ME for many years and women are given it to help with hot flushes so that might have made a difference.
I hope it all goes well for you :)
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