Ron Davis speaks at University of Texas at Dallas

The audience was amazed by what they learned about the disease.

Dr. Davis’ introductory remarks about ME/CFS were interrupted by a professor asking, “Isn’t this a very rare disease?” He responded by pointing out that ME/CFS is more common than Parkinson’s Disease, multiple sclerosis, and AIDS – making it a major disease. The audience’s reaction was shock, prompting another interruption: “How can a disease this common not be widely known?”

More at https://www.omf.ngo/2018/01/31/ron-davis-ut-dallas/

 

Good news that Ron is so effective at spreading the word about ME/CFS and inspiring new researchers to get involved. I hope he also talked about other researchers in the field, and didn't give the impression, as this article does, that he only talked about OMF funded work.

 

How common is ME/CFS, nobody knows. I think the estimates given are huge exaggerations of the real figures. Certainly in my country, it is not a very common illness. If it was as common as its supposed to be, more doctors would be seeing it in their practices. My gp has never come across it and believes in the illness. My occupational health therapist from work has never come across it either and she has a large practice. It just bugs me these figures that are pulled out of the air without anything concrete to back them up.

 

I agree that the official number seems too high, i've never heard of anyone else with it (offline). That said those bedridden won't be out making social contacts, but they have to be somewhere. That said we are fucked up just the same whether we are hundreds of thousands or millions and we need research and treatments.

 

It depends how you define it for a start.....

I certainly can't speak for your country,but in the UK the estimate is about 250,000 ( I have seen some say it may be lower at about 125,000) We have seen attempt to inflate that figure to 600,000 by conflating it with chronic fatigue.

Under reporting will reduce numbers and may even minimize the problem therefore reducing the need for research. The fact that patients who are more severely affected are effectively invisible to society makes that easier. Patients who are out and about, but feel stigmatized, or ashamed of their illness won't be open about it.

On the other hand, inflating the figures may help grease the wheels when trying to sell cheap treatments (CBT).

I don't wish to denigrate your doctor or OT -they may be excellent, but if you are the only patient they have seen with it, could this possibly be because they don't recognize it when they see it. It seems difficult to diagnose in primary health care in the UK.

I have seen figures in the UK about prevalence per GP practice of a given size - can't remember the figures. They seemed to line up roughly with the estimated amount.

ETA - When I meet people I never volunteer that I have ME,though I may need to let them know I am ill. Partly because it isn't their business and partly because past experiences have led me to be cautious. That said in the last couple of years people I have recently met ask me if I have ME - because they recognize the signs they've seen in members of their own family.

 

There is evidence beyond speculation. I remember reading about a big population study Lenny Jason did that used proper methods for getting an estimate of prevalence. Sorry I don't have the energy to find it.

I suspect, as has been said, that a lot of doctors simply don't recognise it, and misdiagnose it as depression, anxiety, malingering, burnout, poor lifestyle, etc etc. And if they don't do home visits, they won't see the severely affected.

I have known, or known of, quite a few ME sufferers over my long lifetime, from more than 40 years ago to the present, including well before I got it myself. And a lot of people won't admit to having it to anyone but close family because of the stigma.

 

This thread might be of interest:

https://s4me.info/threads/chronic-f...diagnosed-opinion-by-dr-rajendra-sharma.2198/

 

I think the prevalence figure of 0.2% is fairly robust. That would be similar to MS, half that of rheumatoid, twice that of lupus and more than Parkinson's, which is not that common although well known. The 0.2% is for the stricter criteria.

The number of people one knows with an illness depends on how obvious the illness is. Outside of my clinical work I have come across three people with MS, about six with rheumatoid, one with Parkinson's and two or perhaps three with ME/CFS. I have come across one person with lupus but I would not know they had it were it not for them knowing I was a rheumatologist.

There are much commoner illnesses but most affect older people. Diabetes affects up to 9% of people but in children and young adults it may only be around 0.25%. So if one were considering illnesses that have major impact on life under the age of thirty one might consider that there is a bunch of illnesses the doctors would consider relatively 'common' at prevalence around 0.1-0.3% including diabetes, RA, MS, Crohn's, lupus and ME/CFS. Each of these takes up a tiny fraction of a generalists workload and they may have no patients with some of them, but because they produce early life disability they figure highly in educational sessions in hospitals - except of course ME/CFS.

I actually doubt that any fully trained clinician is not aware of ME/CFS under some name or other. I suspect that those who were surprised were lab scientists. I am not sure that a disease not being widely known amongst lab scientists is a particular surprise.

 

It says:

"He used the opportunity to introduce ME/CFS to approximately 300 biology and bioengineering researchers..."

 

So there you go.
Well done Ron. The best I have done so far was 40 biotech researchers, and one of them even had papers by Sarah Myhill and Gerwyn Morris to hand!!

 

Fucked up sums it up perfectly Alvin, mentally and physically.

 

Leonard Jason's 1999 prevalence rate was 422 CFS cases (Fukuda) per 100,000 adults (0.422%), with a 95% confidence interval of between 285 cases and 559 cases per 100,000.

Using a current US adult population estimate of about 251.5 million (census data here) you'd get an estimated 1,061,300 US cases, with a 95% confidence range of between 716,775 and 1,405,885 cases.

What percentage of those cases would meet other criteria (CCC/ICC/SEID), I'm not sure.


[ETA: These figures do not include cases under 18 years of age.]

 

In my neck of the woods, I don't think CFS is a commonly assigned diagnosis. After seeing 3 primary care doctors and a handful of specialists, I still don't have a diagnosis (not that I've been pushing for one) and all of them just say that they don't know what is causing my illness. Several of them have suggested that what I'm suffering from would best be addressed by research hospitals. They all agree that something is very wrong with me but not a single doctor I've seen recognizes Chronic Fatigue Syndrome as a real disease.

My two sisters have nearly identical stories to mine. Point is, how many ME/CFS sufferers don't show up in these disease estimates simply because diagnoses aren't given?