A Revised Approach for Chronic Fatigue Syndrome | The Morning Report

Currently, chronic fatigue syndrome, which is now called myalgic encephalomyelitis syndrome or ME/CFS, has no cure. But a recent summit concluded that there is much we can do to improve patients' symptoms and quality of life.

The multispecialty group endorsed the 2015 Institute of Medicine diagnostic criteria of unexplained fatigue with substantial functional impairment, postexertional malaise, unrefreshing sleep, and either cognitive dysfunction or orthostatic intolerance.

[papercup]

FYI, the condition is called Myalgic Encephalomyelitis, or alternatively, Chronic Fatigue Syndrome, and is most often referred to as ME/CFS. There are a few other names too that have been used or suggested, such as CFIDS and SEID, but it is not, and never has been called 'Myalgic Encephalomyelitis Syndrome'. :-)

As Initialconditions (below) points out, the 'CFS' designation was invented in the early 1970s by a couple of psychologists who, without any supporting evidence, formed a personal belief that ME was a type of hysteria, not as we now know, a serious, multi-systemic, chronic physical disease.

As more sophisticated biomedical research methodologies and technologies have developed, many biological abnormalities can now be observed in ME/CFS patients, but back then, most of these were indiscernible to doctors. But in the meantime, the 'CFS' designation stuck, and eventually took over from the more medically descriptive 'ME'. Some doctors even took to referring to it as 'chronic fatigue', as if it had only that one symptom.

The still un-scientifically proven idea that patients were simply tired and out of condition and needed to stop feeling sorry for themselves, thinking they were ill, and get out and get back into life grew and grew, until it became something like a sacred belief for some psychologists, culminating in the infamously biased, poorly designed and implemented 2011 UK PACE Trial, which attempted to prove their theories. That group of believers now has a virtual stranglehold on UK government health policy, discouraging financial and other support for higher quality biomedical research and providing them with a welcome rationalisation for denying social security welfare payments to thousands of seriously ill citizens, leaving them in deep poverty, to add to the challenge of living with often profoundly incapacitating illness.

This unfounded conceptualisation and relabelling of ME/CFS as an unimportant, largely imaginary illness has led to decades of medical neglect, harm and public stigma for many millions of patients all around the world. For this is not a rare or minor disease; it can affect people of all ages, genders and socioeconomic groups, often for many decades, with only an estimated 5% full recovery rate.

But until recently, biomedical research has been almost at a standstill, leaving patients and their would-be helpful doctors in limbo with no further advances in understanding of the biomechanisms of the disease or effective treatments. The unevidenced belief in it as a psychogenic rather than physical disease had stuck so firmly in the minds of many doctors, as well as in media references and in the popular imagination, that patients seeking diagnosis and medical support were, and continue to be routinely told to just 'buck up' and ignore it, or alternatively, to exercise more, both of which can in fact lead to serious long term exacerbation of the illness, and have been shown not to result in long term improvement.

Through lack of useful research and thus of appropriate medical advice and care, an estimated 25% of people with ME/CFS find their lives completely devastated, house- or bed-bound, sometimes too weak to even feed or toilet themselves. Meanwhile their urgent medical needs are ignored, with treatment refused due to patients being too frail to attend clinics. Most patients are at some point bullied or patronised by their doctors and 'carers', their suffering is the butt of jokes by TV comics, and most painful of all, they are often deserted by confused and/or sceptical friends and family, leaving them in virtual isolation from the world, to continue their struggle for survival alone and unaided, rejected by all.

You can donate and/or find further information from the US-based international charities, 'ME Action' and the 'Open Medicine Foundation', which are leading the push for change along with many other excellent national and international patient-led organisations. 'Unrest', a stunning and informative, Oscar shortlisted documentary movie about one couple's journey with ME is available for public and private viewing on DVD, iTunes and other platforms.

[onecraftymojo]

Not sure why she said cognitive dysfunction OR orthostatic intolerance. I have both... 🙄

[RaelanAgle]

This is brief but still helpful. I'll take as much information and awareness on this illness as I can get! This is exactly what inspired me to start my current YouTube channel talking about my 10 years living with CFS and my eventual full recovery. Our stories have power and I appreciate every person who shares theirs or else puts the time into spreading information.

[violamae]

This told me nothing that I hadn’t already heard from Wikipedia...if you’re going to make a video, make it worthwhile, don’t just rephrase a paragraph.

[Daized]

I’ve just been diagnosed. A also have adhd. I’m kind of new to all this but my brain is fighting my body (lol🙄) my mind’s wide awake but my body is far from it... any suggestions?
Edit - I eat well, loads of fruits & veg not much meat. Try to exercise but the psychological aspect is pretty daunting as I know what will happen, end up knackered. Oddly enough I feel more sorry for my dog he doesn’t go out as much as he should due to this although he’s got a large garden. In my view this is just something to beat & im assuming that’s possible? I don’t want to google this (slightly ironic I know).

[RobinJonesOTTAWAArts]

To say that there is no cure reduces her credibility to zero. To make that statement presupposes that doctors know everything which is as flawed a statement as any statement can be.

[emmab]

I have POTS (orthostatic intolerance); does that also mean I officially have CFS? I already know I live with chronic relentless fatigue.

[dirkkatz]

now the cause of Chronic Fatigue Syndrome  is found: radiation of microwaveoven.(magnetron)
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.