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The psychologization that ME/CFS has faced is not unusual. It is a recurring problem in medicine that affects many health problems. The keep trying to explain and solve health problems by paying a lot of attention to and speculating about the psychology of patients. I think this comes from...

I would like to know the truth. Promoting a theory on social media to other patients is exactly the wrong way to find out whether it is correct. This will never produce reliable evidence, but it will, if things get out of hand badly enough, lead to the total discreditation of the idea before...

In ME/CFS we still have to discover what it is that isn't working right. I don't get why everyone isn't focused on finding out what it is in the blood that affects cells exposed to it. If we figure that out then we have something to work with. The other thing we have to work with, PEM is hard...

I thought I was a weak willed person that was misbehaving. That was essentially the message from other people around me and I was willing to believe it and thought that I just had to become a better person and try harder. It was the typical misguided psychological explanation that is really just...

I thought I didn't have a real infection because there was no fever. I have since then learned that some infections do not cause fever.

It might be much more common than we think because mild OI is even harder to recognize as such than PEM. It also seems to be an important component of the ME/CFS phenotype. When the illness is mild and/or in the early stage, is OI already present or not?

The idea of true ME seems to be more an ideal than a reality. As in the case that you're describing, patients can also often be diagnosed with other health problems. It's not clear if these are manifestations of the same problem or if some of them are just overdiagnosed (EDS maybe?) or if it's a...

@Andy is this related to the planned GWAS study? If so, have you also considered asking about signs of possible orthostatic intolerance?

The exact symptoms seem to be less important than the pattern and the impact on the person's life.

When I was milder and going to school, there was a particular pattern of attending school normally for several days or a week, but eventually feeling unwell and staying at home to rest. Then I would soon feel better and return to school, and the pattern would then repeat. Over time, the good...

Exactly. I think the reports of substantial improvement are enough to justify research in this area but I'm uncomfortable that suddenly a lot people are being diagnosed and treated as if there was near certainty when there actually is a lot of uncertainty. There are historical precedents like...

Asking TV and radio to spread the recruitment message. Obtaining contact information from GP records and sending letters or telling GPs that patients are urgently needed for studies.

Which systems does he refer to here? Is this a reference to Naviaux' findings and ideas?

You could write a guest post on ME Action. PS: and reach a broader audience rather than just the small Science For ME community.

An outstanding article. Well done Jaime S. :thumbup:

I would like to take a look at my genomic data, once it's done and I can get my hands on it. This evening I asked my brother again about worsening of symptoms after exertion and what he described is very similar to what I have. He agreed that it's cumulative and delayed. He is significantly...

Type 1 or 2?

Let's assume that the EU decides to make €2 million available for ME/CFS research and projects. What would be the best way to spend this money?

I hope the student realizes that this kind of dishonesty is one reason that psychological theories are unpopular. As patient you can't have a honest discussion with the people proposing them It's also one of the reason these theories are bad: because without a honest discussion, the academics...

I think LDN would be more important as there hasn't been any clinical trials on it yet. Some people say it's a helpful treatment. Re. consensus about illness definition, I would say we need the opposite, a unity movement within the patient community so that we can focus on goals that really matter.