More than Fatigue: Clearly, ME/CFS is not... - Ramsays Disease

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More than Fatigue

Ian123 profile image
9 Replies

Clearly, ME/CFS is not simply a state of chronic fatigue. These data indicate that fatigue severity is matched by cognitive, autonomic, pain, inflammatory and neuroinflammatory symptoms as the predominant clinical features. These findings may assist in the clarification and validation of case definitions. In addition, the data can aid clinicians in recognizing and understanding the overall illness presentation. Framing ME/CFS as a multisystem disorder may assist in developing therapies targeting the multifaceted domains of illness.

tandfonline.com/doi/abs/10....

At first glance a statement of the obvious but given the resistance of some in the medical profession an affirmation from some of the world experts removes any remaining doubts

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Ian123 profile image
Ian123
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9 Replies
SophiaG profile image
SophiaG

My own doctor told me there are many reasons I can have fatigue more to be found before saying what makes fatigue. Depression can make fatigue he said I find you want life so for you I must search more. Telling me some doctor have this knowledge now tell other doctors we can treat same.

Ian123 profile image
Ian123 in reply toSophiaG

A dark cloud of illness with a silver lining that was your doctor Sophia G going beyond the fastest way of getting a patient out of the door.

Changing the NICE 2007 guidelines for ME/CFS so that they take account of knowledge that much more than fatigue requires treatment.

slowmotion profile image
slowmotion

Clearly listening to patients needs research wake up smell the coffee where have they been already its ME for Dummies chapter one.

Seascape profile image
Seascape in reply toslowmotion

Exactly slowmotion CFS from ME not listening.

Ian123 profile image
Ian123 in reply toslowmotion

"Listen to your patient, he is telling you the diagnosis," - Sir William Osler 1849-1919 must agree back to basics slowmotion.

ME became CFS for political reasons in my opinion Seascape but I am biased.

nedd profile image
nedd

I shall wait with hope pined to my chest then.

Born optimist me.

Ian123 profile image
Ian123 in reply tonedd

Optimism is a gift that can help pick you up each time your knocked down.

Hope springs eternal except for cynics such as myself that want a nudge in the right direction with evidence that is not ignored.

budgiefriend profile image
budgiefriend in reply toIan123

I'm with you in that outlook, Ian. I've been burned too many times to trust and go chasing rainbows for pots of gold.

It is important to see what is really going on, but also to love ourselves and to reach out and be kind to others.

If we can be realistic and also caring, I think we will have a balance that works for us.

The psychiatric lobby got a hold partly because some people believed the pseudo science they spouted about mind-body connections. There's a lot of silly new age pseudo psychology that governments are buying into, because it means they can blame the sick for not having a better attitude and thinking themselves well.

Politics is very much a part of what is happening to us, and we and many other sick people are being deprived of human rights because we can be swept into a pile of 'undeserving poor, sick, and disabled' in society.

Remember the Panorama expose of the WCA assessments where one of the trainers told a trainee doctor "Basically, if they can lift one finger, they can push a button, so they can work" or something to that effect?

That was not just personal opinion--it was the attitude and philosophy around which the benefits system assessment process was constructed to cut a large number of recipients in a certain number of years. This had nothing to do with people's ability to work, and everything to do with government quotas in order to cut funding.

There you have it. There is no concern for the quality of our lives or our health. To work can make many of us very ill. They don't care. They only want to appeal to those they can convince that we could work if we tried.

But we do need the optimistic because they can pick the pessimists up and dust us off and say, "Never mind... we're here for you and you are not alone. Here's what you can do now!" I'm really grateful for them!

RockRose profile image
RockRose

Resonating with all of the sharings above...

And...and And...and And, yes

Feeling and experiencing how hope, listening and data may help...influencing deeper understanding, finer treatment and encouragement both now and in our future days...

:-)

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