Comparing CBT for ME with gay conversion therapies is exactly right. Let's face it they want to change our slothful, self pitying ways! But in the same way you can't change someone from being gay we can't cure our serious biological deficits. Both things are doomed to failure and that just adds...
Some of the latest papers from Jon Stone make it clear that he believes FND with its opt in symptoms and neuroimaging has put hysteria on 21st century scientific footing. He has written about how sad it was that the remarkable work done by the likes of Briquet was lost until it was recovered in...
It is possible that there is an ongoing viral presence in ME since enterovirus and EBV both have strong mechanisms to evade the immune system and persist. There is also some evidence that covid does not clear the body. I feel the question is still open enough that I stopped giving blood and have...
My memory might be faulty, but I think anti-cardiolipin was found in people with ME but was another promising avenue that died for lack of funding rather than any research that should it was wrong.
:banghead::banghead::banghead:
(1) intra personal = having a disabling chronic illness is very difficult especially when there is no one helping you with aids and support because your disease is misdiagnosed as psychological.
(2) interpersonal - there would be no stigma and lots of support if...
PEM is usually described as a crash - fatigue and inability to do things - with the symptoms part left out. Things like vestibular dysfunction can easily come on with PEM.
It can be easier to think of the process as overdoing things so your anaerobic threshold drops and lowers how much energy...
This is a good study to look at what is happening to 2 patients with ME. If there had been no changes that would have given certain information but the findings mean something. The next step is to see if other patients have the same thing.
It must have been about 1986 when a cardiologist complained that there were problems with heart traces when patients had them done standing but they were doing done lying down and people were told everything was fine.
Ramsay and others said that all tests should be done when patients had been...
In the days when I was moderate, I would get severe cognitive problems like not being able to work out how to get home but it did not feel like POTS. From my experience, I believe symptoms resembling POTS are caused by dysautonomia which is part of the general ME brain problems due to a lack of...
I have been suffering for over 50 years and I am fed up of all this. It is time for the truth. The disease I have is caused by serious problems in the way my body works. CPET testing has shown that anaerobic respiration in our cells is damaged so we do not have enough available energy to for our...
The difference between this article and the others like it and the ME Terrorists pieces that flooded the media is the most important thing. If we can get acknowledgement that we have a serious, life changing illness it will open doors that will turn our lives upside down for the better.
It is...
We have to be careful with POTS and its association with ME. It is a syndrome not a discrete disease just a set of symptoms that could have many causes. Long before POTS was identified not being able to stand for long was considered a core symptom of ME which was related to problems in the...
They should have had an illness control because just being sick could account for differences.
Having a contested illness is stressful so the results do not give any information about whether they are cause or effect.
At least they have a definition of why the patients were diagnosed as having psychogenic seizures but it also makes no sense. Even if the eeg is atypical that is not evidence for psychological causation.
I have seen this before in articles, particularly in a feature in the New Scientist, where...
I don't think matters at this point whether it is cause or effect. The important thing is that ME is not a disease of fatigue, which is incidental like calling heart failure a disease of fatigue. It is a disease characterized by a failure to produce enough energy.
It may be that not being able...
The numbers for severe ME sound high to us but really severe people will not have been in this study as they are too ill to be part of any trial.
Our surprise is actually because we are so used to how sick you are with ME that we underestimate our health compared to everyone else.
2500 steps...
They were quite determined to not find any! If they had it would have clashed with their declaration to the GET and CPT groups that there was absolutely NO risk of harm - at the start of the trial because that would not be at all dodgy.
When I received reports about ME from a bulletin board before the www, there was a child about 11 being held in a locked ward in Australia. Nurses were encouraged to gently mock her, to leave food where she had to move to reach it and so on.
One of the things they used to "prove" she was not...
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