In my opinion if you have several illnesses they should be treated if possible. The question as to the cause can be answered some other time. That was what I was trying to say. Even if doctors do not know the cause, this shouldn’t stop them from starting to treat illnesses and symptoms. Even without knowing the cause they should be able to asses the impact on your life and the ability to go to work or care for yourself.

I am officially on disability, for now. How long this will last I have no idea. Several CFS patients I know off lost disability and are now unemployed, but considered unemployable. A situation that can change at any time. So they live in constant uncertainty. Some had to lawyer up and go to court.

It’s been 15+ years since I have been diagnosed. Do the doctors still rule everything out before they make the diagnosis of CFIDS? When I got ill, everything was ruled out. It was the illness of exclusion. Is that still the procedure?

I am concerned that the research is becoming challenging and cumbersome because I can now have CFDIS and other illnesses so how does a researcher (or doctor for that matter) determined which illness is the causal link?

I think you were alluding to that, unless I misunderstood.

Anyway, I agree. Doctors should have a standard means of making the diagnosis and determination for disability. I had to go before a Judge and ‘prove’ my case in order to be considered 100% disabled. A doctor just couldn’t seem to do that for me.

Question: Is ME/CFS a single disease with a single cause? Or is it a collection of diseases and causes with similar symptoms? Think Gulf War Syndrome, FM, PVFS, …
I do not have the answer. To me ME or CFS means that you have an as yet undefined disease.

Flu-like symptoms can be caused by bacteria as well; take Lyme-disease for example. Fatigue and cognitive impairment caused by a very active immune system (linked to cytokines) can not only be caused by viral and bacterial infections, but also by cancer.

The fight between the biomedical and psychological school over a disease isn’t without precedent: autism, multiple sclerosis, Alzheimer, AIDS, … all were considered at some point in time to originate between the ears. Psychiatrists and psychologists don’t like losing market share. Now that there is a possible link with a retrovirus they are putting public health at risk (bloodbanks) with their power games, but then again in the UK ME/CFS patients are already not allowed to donate blood.

I think doctors should answer 4 questions when confronted with ME/CFS patient, and answer them separately:
1. What are the symptoms and how can I verify/measure them?
Think out of the box. Standard medical test are inadequate.
2. What is the cause?
“I don’t know” is a more honest answer than “It must be in your head”.
3. Is there a treatment?
If no cause is found, if the disease can’t be named,
can at least (some) of the symptoms be treated?
4. Is this person fit work?

I have the impression that some doctors reason like this: (standard) tests come up negative, so there is nothing wrong, there is no disease, so this patient can go to work. This reasoning is lacking in scientific rigor and intellectual honesty. I think the questions should be answered separately.

I have read that a Swedish study funded by a ME organization in the UK hopes to publish results before the Summer. In Belgium Red Labs will start testing for XMRV in a few weeks time. This means that European samples will no longer have to be send to the USA. Interesting times indeed.

Thanks for commenting

As for some of the statements in this blog, I realize they’re just repeated rumors at this point, but I would like to point out that the original cohort studied by WPI did not comprise “an outbreak”…anywhere. The politically motivated European researchers keep saying that, although they, too, know it isn’t true. They desperately want to disprove any physical cause so they can keep up the mythology that ME is a mental disorder.

Dr Mikovits stated at a public presentation that when they unblinded their cohort, to notify patients of their XMRV status, she found that patients came from clinics across the US and of those patients, some came from UK, Ireland, Germany and Australia, as well as many US States.

Where samples from Dr Peterson’s clinic came into play was at the very beginning, when they were trying to figure out what to look for. Since he has been collecting samples from the early 1980′s to the present and his patients come from all over the world, this can hardly be characterized as coming from an “outbreak”.

Anyway, Johan, I’m vicariously enjoying your experience with Dr deMeirleir; I think you were quite right not to spend the money on the XMRV test, since it’s still being refined, is mainly for research and no one would know what to do about it yet anyway. You may already know this, but WPI and a lab in Europe are doing a blinded study of XMRV and normal samples, to see if they come up with similar results. Patients in UK are currently being contacted for blood draws. UK patients who got together several months ago and sent their blood to VIPdx for testing have about 50% positives so far.

I Like Dr. Bell and I understand that he feels a virus fits. Maybe it will be the causal link but I am willing to consider other things as well.

Just think of all the symptoms one feels when they have the flu. All caused by one virus.

I agree with you here, 100%. I actually do not believe this will be the cause. We are living in bodies that are not functioning properly so the fact that viruses are being found make sense to me.

I also wonder, if it is deemed the cause, why the vast array of symptoms within the CFIDS/ME community? Shouldn’t we all have pretty much the same symptom-ology and severity?