New recognition for Chronic Fatigue Syndrome

[Amigo]

New recognition for Chronic Fatigue Syndrome


The leukaemia I have can bring with it debilitating and life limiting fatigue that’s badly understood (except by the very best specialists in the field). It’s also under-researched and seems to have little to do with level of tumour burden.

I’ve long since suspected it was linked to the errant and exceptionally elated level of cytokine activity related to my blood cancer and the effects of systemic inflammation.
(Cytokines are small secreted proteins released by cells have a specific effect on the interactions and communications between cells).

There’s now believed to be similar processes at play in cases of CFS which remain badly understood and still the subject of clueless suspicion amongst some medics. Sufferers often don’t receive the right level of understanding and medical and benefit support as a result. I know from the posts that I’ve read that some of our members or their family members are affected by this so I thought this might be of interest.


This is an article I read the other day where they are exploring Chronic Fatigue Syndrome as a possible auto immune disorder based on the over production of Cytokines.


An extract from the article;


‘The syndrome is also often accompanied by immune system disruptions, including chronically high levels of cytokines that change how the body responds to stress; poor function of natural killer cells that diminish the ability to fight infections, and abnormal activity of T-cells needed for an appropriate response to infection.’



https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html

 

[mikeyB]

That difficulty in fighting infections is precisely what is plaguing Amanda currently. Couldn’t be a better demonstration of CFS, in fact. It’s about time someone got around to taking this seriously. You can’t fix excess cytokines with antidepressants and talk therapy.

 

[Amigo]

That difficulty in fighting infections is precisely what is plaguing Amanda currently. Couldn’t be a better demonstration of CFS, in fact. It’s about time someone got around to taking this seriously. You can’t fix excess cytokines with antidepressants and talk therapy.

Yes I thought of Amanda @AJLang and others when I posted this Mike but the post seems to have been lost in the sheer volume so I’ll send her a link here.
Might also be of interest to @TheClockworkDodo & @Mark Parrott as I may be wrong but I think his wife has CFS

 

[TheClockworkDodo]

Thanks Amigo, and thanks Mike for your comment about antidepressants and talk therapy - just what we want to hear from doctors! This research has been going on now for a while, but it's good it's getting increasing amounts of recognition.

The one thing that bugs me though is that people will keep calling the illness CFS, which is a term coined by the pseudoscientists who started the antidepressant and talk therapy rubbish, and invented a diagnostic criteria to go with it (diagnostic criteria for CFS is basically unexplained fatigue, disturbed sleep, and mood swings: diagnostic criteria for ME runs to 4 pages of A4, doesn't include mood swings, and doesn't mention fatigue as such, but post-exertional neuro-immune exhaustion). I have come across people with an illness which is closer to the criteria for CFS, but not many. Most people with ME prefer to call their illness Myalgic encephalomyelitis or Myalgic encephalopathy, which are much more accurate descriptions of it and get them taken more seriously (one research study showed that doctors who were told someone had ME took them more seriously than doctors who were told the same person had CFS!).

 

[mikeyB]

I have to say I don’t particularly like the term ME either, because it’s not an encephalopathy, it’s a more systemic condition. And myalgia just means muscle pain, like lumbago means back pain. I think only when a cause is found will it ever get a proper name rather than a descriptive name. And when the cause is found, comes a hope of treatment.

 

[TheClockworkDodo]

Yes, you're right of course, but ME is so much better than CFS! There was some talk at one stage of re-naming it Neuro Endocrine Immune Dysfunction Syndrome, which would be the most accurate in descriptive terms, but really, who's going to remember that?! And why syndrome again, rather than disease?

I found when I told people I had a diagnosis of dysautonomia they were far more understanding than when I said I had a diagnosis of ME. Odd, because it's just a description of what ME does, but for some reason it seems to be more comprehensible to people.

 

[Amigo]

Yes, you're right of course, but ME is so much better than CFS! There was some talk at one stage of re-naming it Neuro Endocrine Immune Dysfunction Syndrome, which would be the most accurate in descriptive terms, but really, who's going to remember that?! And why syndrome again, rather than disease?

I found when I told people I had a diagnosis of dysautonomia they were far more understanding than when I said I had a diagnosis of ME. Odd, because it's just a description of what ME does, but for some reason it seems to be more comprehensible to people.

I think sadly the whole misunderstanding was fuelled by the derogatory name, ‘Yuppie flu’ which stuck and described a non specific type of burn-out.
I do appreciate the frustrations of having a condition that’s badly understood. The link I posted (even though they used the term CFS), at least demonstrates that there’s greater awareness now and research ongoing into immune dysfunction reasons. I must admit that Neuro Endocrine Immune Dysfunction Syndrome would spell out NEIDS and I don’t think that’s helpful at all because it could just fuel the sceptics (and sadly they still exist).

 

[TheClockworkDodo]

Yes, NEIDS was never really going to be a popular alternative, was it!

As you say, there is greater awareness now - like diabetes, if you talk to a nurse you will almost certainly find they are quite knowledgeable about it, because they work with people who have it and see what it does. There are also more people specialising in ME research - it's no longer such an unpopular area to research in. GPs still vary wildly though, and specialists in other conditions sadly tend to know less than nothing about it (in that what they think they know tends to be wrong).

 

[AJLang]

Sorry that I missed this when it was originally posted. Thank you very much Amigo for the information and the link.

 

[Lilian]

In my opinion both ME and CFS are symptoms and doctors are taking them as the disease / conditions in themselves. Same with fibromyalgia. They have made that into a disease / condition. As a symptom the causes of these things can be different. Like someone suffering from headaches. Headaches is not a disease it is a symptom of a variety of conditions from a simple hangover to a brain tumour. Having three conditions myself that carry very similar symptoms it is not easy to find which is the cause of a particular symptom but I think to jump to one conclusion and discard others is a mistake that can lead to misdiagnosis and instead of treatment, just another plaster. Like giving aspirin for all headaches because headaches has been made into a specific condition.