Long term symptoms after Guillain Barré syndrome - relevance to ME/CFS

[Snow Leopard]

Abstract
Introduction: Reports regarding outcome of Guillain-Barré syndrome (GBS) are usually limited to relatively short follow-up. We assessed the occurrence of fatigue and correlated it to clinical measures in patients who had suffered from GBS over 20 years previously.

Methods: We contacted 24 patients with GBS requiring in-hospital rehabilitation during the years 1970-1987. Disability was established at rehabilitation admission using the Hughes scale (HS). Disability and fatigue were assessed at time of this study by the Overall Disability Sum Score (ODSS) and the Fatigue Severity Scale (FSS).

Results: Mean HS at admission was 2.5 ± 0.7, and at follow-up 1.1 ± 1.3. Mean ODSS was 2.8 ± 3.6, FSS was 4.4 ± 2. Ten patients reported severe fatigue (>5). Very good correlations were found between FSS and HS at admission and follow-up and between FSS and ODSS. FSS was not influenced by patients' age, age at disease onset, gender or time from GBS to the study.

Conclusion: Fatigue can persist after apparent recovery from GBS and remain severe for many years.

https://pubmed.ncbi.nlm.nih.gov/22336700/

Notably, 47% of participants reported long term fatigue on the questionnaires. Unfortunately, this wasn't a true prospective study, nor did they use objective measures of functioning or fatigue.

Anecdotally, some post-GBS patients do suffer from PEM and clinically there is strong overlap with ME diagnoses.

 

[Snow Leopard]

A shorter-term study (median 6 year followup)

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1468-1331.2008.02311.x

Background and purpose: The purpose of this study was to analyse the long-term impact of Guillain-Barré syndrome (GBS) on quality of life, and the relationship between clinical variables at disease onset and symptoms at follow-up to general health status.

Methods: Forty-two GBS patients were examined at median 6 years after disease onset and were compared with 50 healthy controls. The fatigue severity scale (FSS), visual analogue scale (VAS) for pain, disability rating index (DRI) and medical outcome study 36-item short-form health status scale (SF-36) were applied. Variables at onset and symptoms at follow-up were correlated with outcome measurements in GBS.

Results: VAS [2.9 (SD 3.3) vs. 1.5 (SD 1.9); P = 0.01] and DRI [2.5 (SD 2.1) vs. 1.0 (SD 1.5); P < 0.001] were significantly higher in patients with GBS, compared with healthy controls. Decreased physical functioning and general health were found on SF-36. Differences between GBS patients with shorter (<6 years) and longer (≥6 years) follow-up after onset were not found.

Conclusions: Relatively independent from various variables at onset, patients with GBS seem to have a reduced quality of life and functioning, and the distress seems to have become persistent after the first few years with improvement following the acute disease.

 

[Hutan]

https://emedicine.medscape.com/article/315632-overview

Guillain-Barré syndrome (GBS) can be described as a collection of clinical syndromes that manifests as an acute inflammatory polyradiculoneuropathy with resultant weakness and diminished reflexes.

Although the classic description of GBS is that of a demyelinating neuropathy with ascending weakness, many clinical variants have been well documented in the medical literature.

The typical patient with GBS, which in most cases will manifest as acute inflammatory demyelinating polyradiculoneuropathy (AIDP), presents 2-4 weeks following a relatively benign respiratory or gastrointestinal illness with complaints of finger dysesthesias and proximal muscle weakness of the lower extremities. The weakness may progress over hours to days to involve the arms, truncal muscles, cranial nerves, and muscles of respiration.

Most patients complain of paresthesias, numbness, or similar sensory changes. Paresthesias generally begin in the toes and fingertips, progressing upward but generally not extending beyond the wrists or ankles.

I've said before, I see a lot of similarities between ME/CFS and GBS. I have not understood why ME/CFS is viewed so sceptically when GBS is acknowledged to exist.

My symptoms occurred after a not particularly remarkable gastrointestinal illness. Numbness/pins and needles of my hands was a very marked symptom of the early months and it comes back when there is a flare. In the first year, I had occasional foot falls.

When I was seen by an infectious diseases associate professor (a very experienced well-regarded doctor), quite some months into the illness, she was unable to find my knee reflexes. She tried really hard, had me doing distracting things, had me lying on my side... I think if they were there, she would have found them. She referred me to a neurologist, it took months to get an appointment. He of course found the reflexes and was very dismissive of everything, including the infectious diseases doctor and most certainly me. I have long thought the absence of reflexes might have been a clue.

Autonomic changes in GBS can include the following:

• Tachycardia
• Bradycardia
• Facial flushing
• Paroxysmal hypertension
• Orthostatic hypotension

Other variants
The pharyngeal-cervical-brachial variant of GBS is distinguished by isolated facial, oropharyngeal, cervical, and upper limb weakness without lower limb involvement. There can be combinations of any of the above subtypes, and virtually any combination of nerve injury. There are likely mild cases that cause temporary symptoms, improve spontaneously, and never get definitively diagnosed.

So, taken together with the fact that some people with GBS seem to stay fatigued, and Snow Leopard tells us that there are anecdotal reports of PEM, why can't ME/CFS be a variant of GBS?

 

[Snow Leopard]

https://emedicine.medscape.com/article/315632-overview


I've said before, I see a lot of similarities between ME/CFS and GBS. I have not understood why ME/CFS is viewed so sceptically when GBS is acknowledged to exist.

My symptoms occurred after a not particularly remarkable gastrointestinal illness. Numbness/pins and needles of my hands was a very marked symptom of the early months and it comes back when there is a flare. In the first year, I had occasional foot falls.

GBS is characterised by severe paresis/paralysis that starts in the extremities, typically the legs, though sometimes the arms. Occasionally there is a facial variant.

Foot drop associated with GBS is never 'occasional', but continuous and takes months to recover from (if there is full neurological recovery).

What is notable however is the ongoing symptoms that are similar to ME/CFS, that are not explained by abnormalities in typical nerve conduction tests, similar to ME/CFS. (https://link.springer.com/article/10.1007/s00415-006-0962-9 etc)

So, taken together with the fact that some people with GBS seem to stay fatigued, and Snow Leopard tells us that there are anecdotal reports of PEM, why can't ME/CFS be a variant of GBS?

There have been a few authors who discuss the possibility of "sub-clinical" GBS and I sometimes wonder if that is what some people with ME/CFS diagnoses really had?

I also wonder about whether the symptoms are perpetuated by ongoing neuropathy, such as single-fibre neuropathy. I know that Jonathan Edwards recently remarked about the association of SFN with Fibromyalgia not explaining the symptoms (he suggested the neuropathy would lead to lower sensitivity), but different types of single fibre neuropathies are possible, depending on the tissue type. There is also the possibility that it is not a reduction in nerve fibres that is the problem, but that some nerve fibres that recovered could have become sensitised (or even to other stimuli) in the process.

On the topic of tachycardia or orthostatic intolerance, authors have proposed a different mechanism to that typical of POTS:
"Correlation analysis suggested that tachycardia in the context of GBS might be caused by a reduction of sympathetically mediated peripheral vascular tone rather than by vagal failure."
https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.410420207