% with cfs are unemployed?

[keepontruckin]

I think it is important to include the percentage of people with cfs who are unemployed in correspondence with our political representatives. I think I recall someone saying about half of people with cfs are unemployed. If anyone has heard of a percentage, please let me know. I am sure a good percentage only work part time as well. And a good percent who are working, should not be.

So for example in Canada the census data showed that about 800,000 Canadians received a diagnosis of cfs and this number was estimated at over 1 million if those with fibromyalgia and multiple chemical sensitivity are included. If half these people are unemployed that is huge and should add weight to funding decisions.
It's unfortunate but our needs have to be weighed against others and here is an example. 48 children with cancer costing $25 million.
https://www.cbc.ca/news/health/car-...lth-canada-all-non-hodgkin-lymphoma-1.4984943

 

[Neunistiva]

I think "unable to work" is a better expression than unemployed, because unemployment can be voluntary (lazy-label and all that).

In OMF's "End ME/CFS Pamphlet" it says

"80% unable to work or attend school full time."
​

What is ME? by MEAction says

It often follows an infection and leaves 75% of those affected unable to work​

Beyond Myalgic Encephalomyelitis says this

A 5-year follow-up study by Andersen and colleagues (2004) found that work disability of ME/CFS patients, identified in accordance with the Fukuda definition, increased from 77 to 91 percent, indicating no evidence of recovery.​

 

[Hip]

The severity of ME/CFS is often quantified by the scale: very severe, severe, moderate, mild. By definition, those with very severe, severe and moderate ME/CFS are not able to work. And by definition, those with mild ME/CFS are usually able to work, either part-time or full-time (although it is a struggle to do so).

Around 25% of ME/CFS patients have the mild form (ref: here), so that means 75% of ME/CFS patients will be too disabled to work.

 

[keepontruckin]

If 20% of people with lyme disease are ending up getting chronic lyme which it seems they are suggesting is mecfs then you have to add that population onto the heap as well. How many more would that be. I noticed that in a recent interview with Dr. Ron Tompkins, he mentioned the only way to get funding is to shame them into funding. It does not look as though an approach different from the AIDS approach will work. I noticed he thinks the path forward is slower than others are hoping for.
I think we have to make the numbers be known, including the 20percent of chronic lyme who develop mecfs.

The percentage of people with cfs diagnosed by a doctor is quite a bit higher in Canada. I wonder which percentage is closer.

If there is a connection between chronic lyme disease and cfs then obviously it would be a big benefit to make this well known. Lyme disease is getting more funding, respect and recognition. I don't know if it is as simple as saying chronic lyme is similar or the same as cfs. Wish I understood.

 

[me/cfs 27931]

A recent study found "47% were unable to work". Fukuda criteria.

Onset patterns and course of myalgic encephalomyelitis/ chronic fatigue syndrome
Chu et al 2019
https://www.frontiersin.org/articles/10.3389/fped.2019.00012/abstract

 

[Neunistiva]

A recent study found "47% were unable to work". Fukuda criteria.

Onset patterns and course of myalgic encephalomyelitis/ chronic fatigue syndrome

Full text hasn't been published yet. I wonder how they recruited patients. If it's patients who come to the clinic then severe patients were excluded.

Either way, an interesting paper. I'm looking forward to reading full-text. Good find!