Post-stroke Chronic Fatigue Syndrome (CFS) and mobile app for CFS

Source: Irish Times

Date: October 29, 2018

Author: Sylvia Thompson

URL:
https://www.irishtimes.com/life-and...ferences-talks-campaigns-and-events-1.3673149

Ref:
https://www.eventbrite.com/e/world-stroke-day-2018-upagainafterstroke-tickets-51615212490

https://www.world-stroke.org

Upcoming conference: Post-stroke fatigue
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Coping with post-stroke Chronic Fatigue Syndrome (CFS), returning to work after a stroke and a new mobile app for CFS sufferers will all be discussed at Workbench in Bank of Ireland, Block 1, Blanchardstown Corporate Park, Dublin 15 on Tuesday, October 30th, 3pm-5pm.

The event is organised as part of the campaign of the World Stroke Organisation for stroke survivors and caregivers. Tickets on eventbrite.com. The event will be livestreamed on the Life-after-stroke Facebook group

https://www.facebook.com/groups/143802206262536/

 

You can't get post stroke CFS if by CFS you mean ME! This is another example of the way ME = CFS = fatigue. I am sure that people who have a stroke can have extreme fatigue but if they do not find themselves unable to get out of bed after feel fine for 3 days after doing more than normal, they don't have ME. If the first sign of doing too much is not a sore throat, swollen glands and flu like feelings, do they have ME?

If they are looking for these things and finding them, fine but I think the SWs goal of making ME disappear has finally come to pass.

 

It is hard to tell what is being suggested from these links.

Historically it is well known that significant fatigue can be part of the aftermath of a stroke, but it was previously assumed to resolve as the electrical activity in the brain stabilises and rebalances (sorry struggling for the right terms) and the patient adapts to their new brain functioning.

However, as the patient is continuing on with reduced brain capacity many activities may require more effort and consequently be more tiring than premoridly, also activities using impaired neurological pathways are more susceptible to being more markedly impacted by tiredness, rather in the same way that an activity that a well person can do very easily is less disrupted by tiredness than one they find difficult.

None of these factors necessarily indicate that a stroke can trigger the onset of Chronic Fatigue Syndrome or ME.

If these speakers are saying they have observed the symptom of chronic fatigue in their stroke patients over and above the factors raised, that is new and of interest.

Using the term CFS is saying much more than this, and it raises the question do they really mean this, and have they done the necessary work to ensure a differential diagnosis has been made between post stroke fatigue and ME/CFS. Have they ensured they are not just confusing the phrases 'chronic fatigue' and 'chronic fatigue syndrome' which are very different things? Do their stroke patients have all the symptoms ME/CFS specialist would recognise as necessary for a second diagnosis of ME/CFS over and above chronic fatigue which can be a symptom of very many conditions? We are well aware of the problems of differential diagnosis in some situations, a common issue being how do you decide if an individual has a thyroid condition alone or a co-occurring diagnosis of ME/CFS. [There are an overlap of symptoms between stroke and ME/CFS that would make a differential diagnosis between post stroke chronic fatigue and stroke plus co-occurring ME/CFS a complex issue.]

Having said that, if a stroke can result in symptoms that mimic ME/CFS that may tell us something interesting about the neurological basis of ME/CFS. Alternatively since it is generally said that a trauma of any sort, a car crash or even sometimes a psychological trauma, can be a less common trigger for ME/CFS, could it be that the trauma of having a stroke, an acute neurological assault, serves in the same way as a trigger for ME/CFS as we here would generally understand it?

As the references here [just] allude to rehabilitation and return to work [and not to diagnosis], I doubt that this clear distinction between a symptom of 'chronic fatigue' and a diagnosis of co-occurring 'chronic fatigue syndrome' have be thought through. Such a clear distinction is important as what might be appropriate management for post stroke 'chronic fatigue' may be very different to what is appropriate for a co-diagnosis of stroke and ME/CFS.

 

Since it is neurologists involved it is most likely a confusion with chronic fatigue and CFS. The FND sites use fibromyalgia for widespread pain and CFS for fatigue and often refer to them as symptoms rather than diseases in their own right.

Studies of the brain which unravel the cause of fatigue would be useful for us as fatigue is part of ME in the same way it is part of MS or RA. Our symptoms make life harder to do so we have the same roots of fatigue as them and there could well be a neurological component involved.

The problem comes when ME is seen as being JUST fatigue especially when doctors are saying ME but meaning CF and patients are hearing ME when doctors are saying CF. The complicated biochemistry of our disease will be ignored and we will be blamed for not being amenable to treatment the way people with other illnesses are.