Patient: "The latest thinking on chronic fatigue syndrome"

Clearly she hasn't bothered herself with any due diligence by applying herself to research the latest evidence or she'd know what a pile of bollocks she's talking.

 

Yes, some journalism does have a way of taking what someone says and then processing it so it sounds more like what they think their readers might prefer to read, with little care for what was actually said, nor how it was said.

 

That's too generous of an interpretation.

 

I don't actually think this is journalism. It is advertising.

 

Why so many words? Isn't this a Tommy Cooper joke about a man who goes to the doctor and says doc it hurts when I do this and the doc goes, don't do it then.

 

The amount of bull**** available online is unbelievable. And when these article are promoted and make it onto mainstream media, people believe it like religion.

That Reverse Therapy looks like a derivative of CBT without calling it CBT. Psychology and behaviors therapies will not cure any ME patients.

We need good science. Biomarkers. Hopefully clinical trials soon.

 

My NHS GP surgery uses patient.info as their source of information to print out for patients. I've been handed articles from there about four or five times over the last few years.

 

It may do if they have no idea where it is but still give advice!

 

This phrase has caused me bother in the past:

i was being assessed. The assessor probably thought it was a nice gentle chat, to me it was like a gruelling mental workout and about an hour in she says something along the lines of:

"If rest doesn't alleviate symptoms then why rest? Surely, you should just try to carry on? Excessive rest is bad for you......"

From somewhere I still had enough cognitive spoons to make the points -

"Rest may not make me feel better, but it helps slow, if not stop, me getting worse. If I try to carry on without rest I usually end up black and blue with bruises, cause lots of accidents and breakages.

I don't actually like resting and I sometimes need to sleep when I rest. If I sleep during the day when I need to then, contrary to popular opinion, I am more likely to be able to sleep at night. Attempting to push through makes everything, including insomnia, worse.

I feel awful for an hour or more after I wake, but it's still better than how I would feel if I didn't rest."

I also asked her to define excessive rest. She didn't.

I think they way the MEA and charities talk about rest needs to be reviewed. It's misleading and makes it sound like an unnecessary luxury, rather than a vital, if unwanted, necessity.

 

What they seem not to understand is that rest is not optional. It is forced upon one. Without it one will come to a complete halt in an uncontrolled situation.

 

Yes! To this and @Invisible Woman

 

Oddly enough I had a Christmas email from them this morning. They are part of EMIS, which provides some services to my GP practice. Booking appointments, ordering repeat prescriptions. On the website you use for that it seems they offer results of investigations too, but I can't access my results. I'll be asking my GP next time I see her, as I'd like to have copies of blood tests etc to both track for myself and to have available next time I need to fill in the blasted PIP forms. (fortunately I have over 7 years before that comes up again, touch wood!)

Then there's a series of links to articles to read...

What it’s like to give birth on Christmas Day
How to avoid indigestion
What does burping say about your health?
What binge-watching is doing to your health
How to get your children to go to sleep
Do you really need to walk 10,000 steps a day?

Here's the stuff off the bottom of the email:

 

The 'not relieved by rest' thing is on the current CDC CFS page says:

https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

Is it from a part of the Fukuda criteria that keeps being misunderstood?:

"is not substantially alleviated by rest"

https://me-pedia.org/wiki/Fukuda_criteria

 

Yes, but it often seems to get misinterpreted.