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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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More Books for CFS Self-Healers


Running on Empty: Overcome Your Childhood Emotional Neglect
October 1, 2012
by Jonice Webb
View attachment 8777Running on Empty is the first self-help book about Emotional Neglect: an invisible force from your childhood which you can't see, but may be affecting you profoundly to this day. It is about what didn't happen in your childhood, what wasn't said, and what cannot be remembered...

To read more follow the link below.

http://www.amazon.com/Running-Empty-Overcome-Childhood-Emotional/dp/161448242X/ref=sr_1_1?s=books&ie=UTF8&qid=1415745640&sr=1-1&keywords=running on empty overcome your childhood emotional neglect


The Instinct to Heal: Curing Depression, Anxiety and Stress Without Drugs and Without Talk Therapy – December 23, 2004
by David Servan-Schreiber
View attachment 8778Millions of Americans try drugs or talk therapy to relieve depression and anxiety, but recent scientific studies prove certain alternative treatments can work as well or better-often bringing on a cure....
To read more, follow the link below.

http://www.amazon.com/Instinct-Heal-Depression-Anxiety-Without/dp/1594861587/ref=sr_1_1?s=books&ie=UTF8&qid=1415745878&sr=1-1&keywords=instinct to heal
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This has nothing to do with ME so why is it appearing on an ME forum?

Depression causes chronic fatigue, but that is VERY different to the chronic fatigue experienced in myalgic Encephalomyelitis.

The author of this blog obviously doesn't realise that fact.
The author was probably suffering with depression and/or anxiety and misdiagnosed with CFS because the UK 'CFS/ME' clinics don't make this distinction based on scientific research, and therefore people with depression who have fatigue as a symptom of the depression very often get misdiagnosed with CFS.

This isn't the author of this blog's fault, but it is the fundamental problem with:

A) 'CFS/ME' clinics which profess to diagnose and treat ME exclusively but actually the clinics treat chronic fatigue which can come from innumerable other conditions including depression

And

B) The name CFS being used as synonymous with ME only exacerbates misperceptions of the disease and makes misdiagnosis far more likely.

This is not good for anyone who experiences fatigue from any condition, but least of all for myalgic Encephalomyelitis because it skews research and it means the clinical care from the health service - private as well as NHS - offered to Myalgic Encephalomyelitis patients is not fit for purpose and only makes people's condition worse because the treatments are geared up to fatigue of psychological origin which responds to exercise, which is NOT applicable in ME - because chronic fatigue of any cause and ME are not properly differentiated in research. This means the research results are wrongly applied to the wrong patient cohort.

I think ME fundamentally must be differentiated from chronic fatigue if anything is to improve.

Chronic fatigue is a key symptom of multiple sclerosis but MS is not called a fatigue syndrome.
 
I can't stand reading information like this which claims depression and emotional neglect need to be addressed in CFS.

But, it's not the author's fault; it is the system that's wrong and until that is improved, ignorance won't either.

ME has to be properly differentiated from chronic fatigue of other causes.

The UK clinics and 'specialists' do not do that.

Thankfully some research is beginning to try to differentiate this, but this is only just beginning in drips and drabs here and there; certainly the majority of research does not currently make this distinction. this needs to be done across the board as classic myalgic Encephalomyelitis patients are severely physically ill and not getting appropriate treatment because of the mess of CFS, ME and chronic fatigue in the UK, and across the world (but UK are among the very worst).

Plus I would like to mention - many ME patients have never suffered from depression and have no history of child abuse or neglect.

Recent research in Newcastle dine on ME patients excluded all patients with any history of psychological problems including depression and anxiety from its recruitment.

And the result of the research found that there was NO link between childhood maltreatment in ME.

This highlights the need to differentiate ME patients from patients with psychological fatigue, and the benefits of clarity and reliability this brings, ensuring ME patients do not suffer injustice of marred research results from being bunched in with other conditions.

We need more research like this that is selective in it's recruitment if we are to get reliable results.

This will benefits all patients with fatigue of all causes but most of all will benefit ME patients who have suffered for too long without acknowledgement and treatment of their complex biological disease.
 
I think you are probably a kind person who really wishes to help. But you need to understand how much damage this "psychogenic" view of MECFS in general has caused us sufferers over the years (that our illness is caused by negative emotions, etc). It has enabled the medical profession to write us off as simply having psychological problems, so we haven't received the treatment we so need. Some of us have met with scorn and contempt, when what we need is real help.

The "psychogenic" view also causes other, more serious problems. It inhibits the investment in real research to uncover the origins of our very physical illness, which might lead to new, more effective treatments. So in a way, it perpetuates itself. It is very dangerous.

If I were you, I would be thanking my stars for the remission, using my newfound health to help advocate for the rest of us with no anger or negative emotions, who remain sick and need proper medical treatment. Help spread the word that this disease is real, and debilitating, and worthy of recognition and proper treatment. That would be really helpful!

If you really did have ME/CFS – and I very much hope not, it is a terrible disease – then you are not cured, but rather “in remission”. So it would be a good idea to read more about this illness on this site, so you are prepared if a relapse occurs. Hopefully not, you may be one of the very small percentage of MECFS sufferers that genuinely recovers to complete and full heath without further episodes.
 

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