Patient: "The latest thinking on chronic fatigue syndrome"

[Snowdrop]

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.

 

[Barry]

I didn’t think the autoimmune stuff could come from the mea. I also am not sure dr Shepherd would have spoken like that about CF.

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.

 

[James Morris-Lent]

Sounds like someone is confusing having negative emotions with having ME/CFS and fibromyalgia.

That's too generous of an interpretation.

 

[Jonathan Edwards]

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

 

[large donner]

One therapy that has worked for some but not all people who've tried it is called reverse therapy (RT). RT is a simple educational process that teaches people to identify the triggers which cause symptoms such as fatigue and unexplained pain. As soon as these triggers are recognised and understood then progress can be made to eliminate at least some of the causes of distress. In this way RT can provide a practical means of managing the emotional, cognitive and physiological processes that influence symptoms.

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.

 

[Milo]

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.

 

[NelliePledge]

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

This

 

[Arnie Pye]

As far as I can see Patient is a front for a commercial health company - presumably subcontracted to by NHS England. But it says remarkably little on the site that I can find that really tells you what the conflicts of interest are.

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.

 

[NelliePledge]

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.

Yes I had that from a GP too

 

[Sean]

Therefore specialist involvement is needed at an early stage, including physiotherapy and occupational therapy.

Why?

You'd think after thirty years of failure they would have discovered at least a little humility about their relevance. But no, they just go on indulging their empire building and inserting themselves and their ideas into our lives, ever more certain in their obvious ignorance.

One therapy that has worked for some but not all people who've tried it is called reverse therapy (RT). RT is a simple educational process...

Since when has education been a therapy?

If I am in a strange town and hungry but don't know where to find the supermarket, is that just lack of relevant knowledge or a 'pathology' that needs 'therapy'? Does a local resident informing me where to find the supermarket constitute a therapy?

 

[Jonathan Edwards]

Does a local resident informing me where to find the supermarket constitute a therapy?

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

 

[Invisible Woman]

This phrase has caused me bother in the past:

The fatigue and other symptoms are not caused by ongoing excessive exertion and are not relieved by rest' (The ME Association).

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.

 

[chrisb]

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.

 

[Unable]

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

 

[ladycatlover]

As far as I can see Patient is a front for a commercial health company - presumably subcontracted to by NHS England. But it says remarkably little on the site that I can find that really tells you what the conflicts of interest are.

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!)

Dr. Sarah Jarvis, MBE, Clinical Director at Patient

Hi xxx, (name deleted by me)



For many people, the Christmas period is a time when all bets are off from a healthy-living perspective! And I certainly won’t chide you for overindulging slightly. But you may want to heed my advice for avoiding indigestion:



Firstly, remember to pace yourself. Come up with some lighter alternatives to traditionally heavy Christmas foods. Clear the table between courses so you’re not tempted to eat more than is comfortable. And don’t skip the bracing family walk!



Wishing you a happy, peaceful holiday.



Thanks and enjoy!

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:

© Egton Medical Information Systems Limited. Registered in England and Wales.



Patient Access is the name of the service which is delivered by EMIS Health on behalf of many GP practices to enable patients to access a variety of GP services online.



Registered number: 2117205 Registered office: Rawdon House, Green Lane, Yeadon, Leeds LS19 7BY. Patient is a UK registered trademark.

 

[Esther12]

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.

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

• Greatly lowered ability to do activities that were usual before the illness. This drop in activity level occurs along with fatigue and must last six months or longer. People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS:
  • Can be severe.
  • Is not a result of unusually difficult activity.
  • Is not relieved by sleep or rest.
  • Was not a problem before becoming ill (not life-long).

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

 

[Sean]

'not relieved by rest'

I think that simply means it is not fully resolved by rest (or sleep) as it would be in a normal healthy person, not that rest isn't helpful or unnecessary.

 

[Esther12]

'not relieved by rest'

I think that simply means it is not fully resolved by rest (or sleep) as it would be in a normal healthy person, not that rest isn't helpful or unnecessary.

Yes, but it often seems to get misinterpreted.