livinglighter
Senior Member (Voting Rights)
Moderators, please move my post if it takes the original discussion off track. However, I feel it's necessary to mention the following observations I've made so far causing my uncertainty about why ME and LC are groups not covered.
Having done more reading about Acquired Brain Injury, NTBI is not due to a psychological cause. It is an injury type causing cellular, receptor and neurotransmitter damage/dysfunction. The research also says those who suffer multiple head injuries (including brain injury) are more predisposed to suffering from ABI and worsening. Unsurprisingly, several theories have also been proposed arguing patients are unlikely to be suffering non-visible brain injury and are more likely suffering psychosomatic disorder, often due to early childhood trauma, etc.
I now think this is the issue people with ME/CFS have faced. All the symptoms we face are not attributed to possible Acquired Brain Injury, which the standard battery of testing usually carried out won't find.
The extensive rehabilitation provision for TBI and NTBI is the same, and it is said the latter causes the same if not worse problems due to widespread brain injury.
I think considering the possibility of brain injury is a grey area for ME. For example, Enecephiltis is a well-known cause of ABI because it usually causes concussion (head injury) and the person suffers an apparent loss of consciousness (mild traumatic brain injury). However, loss of consciousness is not the only mild traumatic brain injury. Any alteration in mental state at the time of the accident (e.g., feeling dazed, disoriented, or confused) is considered a mild traumatic brain injury even if it lasted a few seconds - minutes. I for one felt dazed, disorientated, saw floaters (stars) and had blurred vision during my acute viral onset and during my relapse following remission. It lasted a few seconds/minutes so I didn't consider it severe enough to go to A&E. Instead I decided to try to recover at home and reported the scary second incident to my GP. Perhaps had I attended the hospital or GP surgery the NICE Head injury guidelines would have applied and that is what is meant by rehab being available as it covers strokes, etc.
In the case of mild traumatic brain injury, which can be caused by various things such as infections, inflammation and immune disorders, both long term extensive and short term rehabilitation can be accessed depending on the severity of the effects of the injury. However, patients are sometimes given community-based services as they're expected only to have temporary non-lasting difficulties. I find this similar to the kind of short term service offering for mild-moderate ME patients who can self manage at fatigue clinics. Neurophysiotherapists may be familiar with the concept of PEM as it is a common post-concussion symptom.
The following quote is from a post-concussion rehabilitation service treating Covid 19 patients with neurological symptoms.
I now think the missing part of the puzzle for pwME could be an ABI diagnosis or just its outright recognition. Because even with multiple secondary care referrals for individual symptom management, I think both the doctor and patient may struggle if there is no/incorrect neurological understanding of the basis of the patient's symptoms.
As we all know, the cause of ME/CFS is fiercely contested - organic vs non-organic. Before the 2007 guideline, some services were set up to provide multidisciplinary care for what was likely to be organic causes. Following the PACE trial, it changed to psych based services, most probably including the medical backgrounds of the therapists delivering 'treatments'. Even the LC guidelines recognise services led/run by psychologists are not appropriate for providing patient care services. I think that might be because understanding how brain injury causes mental health issues is an additional unit of study undertaken when training to be a neuropsychologist.
That's my take so far on how ME/CFS links to brain injury anyway. Some pwME have had their injuries validated through neurocognitive evaluations because in a subset of patients mild traumatic brain injury can cause severe long term symptoms and disability.
https://www.headway.org.uk/about-br...brain-injury/mild-head-injury-and-concussion/
Having done more reading about Acquired Brain Injury, NTBI is not due to a psychological cause. It is an injury type causing cellular, receptor and neurotransmitter damage/dysfunction. The research also says those who suffer multiple head injuries (including brain injury) are more predisposed to suffering from ABI and worsening. Unsurprisingly, several theories have also been proposed arguing patients are unlikely to be suffering non-visible brain injury and are more likely suffering psychosomatic disorder, often due to early childhood trauma, etc.
I now think this is the issue people with ME/CFS have faced. All the symptoms we face are not attributed to possible Acquired Brain Injury, which the standard battery of testing usually carried out won't find.
The extensive rehabilitation provision for TBI and NTBI is the same, and it is said the latter causes the same if not worse problems due to widespread brain injury.
I think considering the possibility of brain injury is a grey area for ME. For example, Enecephiltis is a well-known cause of ABI because it usually causes concussion (head injury) and the person suffers an apparent loss of consciousness (mild traumatic brain injury). However, loss of consciousness is not the only mild traumatic brain injury. Any alteration in mental state at the time of the accident (e.g., feeling dazed, disoriented, or confused) is considered a mild traumatic brain injury even if it lasted a few seconds - minutes. I for one felt dazed, disorientated, saw floaters (stars) and had blurred vision during my acute viral onset and during my relapse following remission. It lasted a few seconds/minutes so I didn't consider it severe enough to go to A&E. Instead I decided to try to recover at home and reported the scary second incident to my GP. Perhaps had I attended the hospital or GP surgery the NICE Head injury guidelines would have applied and that is what is meant by rehab being available as it covers strokes, etc.
In the case of mild traumatic brain injury, which can be caused by various things such as infections, inflammation and immune disorders, both long term extensive and short term rehabilitation can be accessed depending on the severity of the effects of the injury. However, patients are sometimes given community-based services as they're expected only to have temporary non-lasting difficulties. I find this similar to the kind of short term service offering for mild-moderate ME patients who can self manage at fatigue clinics. Neurophysiotherapists may be familiar with the concept of PEM as it is a common post-concussion symptom.
The following quote is from a post-concussion rehabilitation service treating Covid 19 patients with neurological symptoms.
I now think the missing part of the puzzle for pwME could be an ABI diagnosis or just its outright recognition. Because even with multiple secondary care referrals for individual symptom management, I think both the doctor and patient may struggle if there is no/incorrect neurological understanding of the basis of the patient's symptoms.
As we all know, the cause of ME/CFS is fiercely contested - organic vs non-organic. Before the 2007 guideline, some services were set up to provide multidisciplinary care for what was likely to be organic causes. Following the PACE trial, it changed to psych based services, most probably including the medical backgrounds of the therapists delivering 'treatments'. Even the LC guidelines recognise services led/run by psychologists are not appropriate for providing patient care services. I think that might be because understanding how brain injury causes mental health issues is an additional unit of study undertaken when training to be a neuropsychologist.
That's my take so far on how ME/CFS links to brain injury anyway. Some pwME have had their injuries validated through neurocognitive evaluations because in a subset of patients mild traumatic brain injury can cause severe long term symptoms and disability.
https://www.headway.org.uk/about-br...brain-injury/mild-head-injury-and-concussion/
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