"CFS" and fibro "after" sarcoidosis

Numerous people are being diagnosed as having CFS and fibro after apparent remission of sarcoidosis. Numerous questions arise
1) What does the diagnoser know about CFS or fibro?
2) What does the diagnoser know about work on post sarcoid fatigue vs sarcoid e.g. persistent shift to TH1 in post sarcoid. Does this typify CFS?
3) GWS shares similarities with FM and CFS but is considered distinct. What is the rationale for considering post sarcoid not to be distinct from CFS?
4) Do such diagnoses in fact promote the "it's all the same because we don't know what causes it, therefore it is a blob of MUPS to be treated not with enquiry but skepticism"?
5) What does the diagnoser know about poor oxidative phosphorylation in chronic sarcoid and how does this compare with post sarcoid fatigue and CFS?
6) Does CFS mean ME?
7) What does the diagnoser know about 2dayCPET (normal in one trial on active sarcoid) No data to my knowledge on post sarcoid fatigue.
8) Is diaphragmatic weakness of sarcoid myopathy (SM varies with one type showing no sarcoid tissue in muscles) playing a role in persistent fatigue? Supine vs sitting FVC rarely given. (2ndary question is sarcoid sensu lato all about granuloma?)
9) Is the exertion intolerance of sarcoid PEM? Many conditions exhibit exertion intolerance but they are specific - simple example would be McCardle's glycogen storage disease. No one would wish to confuse Mc Cardle's with ME. Is it not possible that the specific problems involved in post sarcoid ExI should be considered and investigated a such rather than or before lumping in with CFS/ME?
10) As per 8), has the sarcoid really gone????????

Sarcoid fatigue can imo give ME/CFS a run for its money in many cases. It is wipe out after minimum effort, return to baseline and imo the CFS/ME community should be aware and open to engagement with sarkies. Post sarcoid fatigue is also real and disabling. We do not know in what ways post sarc fatigue is akin to ME/CFS. It cannot however be casually presumed that (post) sarcoid EI of great severity is PEM nor that as a whole post sarc is CFS/ME. Equally it cannot be presumed that PEM is worse than extreme EI.

It is a difficult one because if your sarc has "gone" to be honest sarc services have nothing to offer. Those who diagnose post sarc as CFS/ME may be trying to give the patients whom they believe a recognised status which may be of value in the system. And there may be enough commonalities to make post sarc research of relevance to at elast soem ME cohorts. But causla diagnosis may encourage casual dismissal of either patient or concept or both, however benign the intention.

A difficult issue imo. But since ME sufferers are in effect being "twinned" with post sarc by medics who are not expert in ME/CFS, what do folk on here think? It should also be of interest that sarkies are getting FND diagnoses.

 

Have I understood correctly that the cohort was ongoing rather than post sarcoid? Thanks anyway.

 

'Sarcoid' covers two largely distinct problems. Acute sarcoid with hilar lymphadenopathy and often diffuse calf swelling due to oedema tends to remit after a short period. Chronic sarcoid is almost certainly a lifelong condition once it has appeared and so post-sarcoid is pretty meaningless. The two conditions overlap so some people with acute sarcoid probably have a life-long condition too, even if there are no persisting signs.

Basically 'post-sarcoid' is a misunderstanding. The problem is sarcoid. How close the fatigue is to ME/CFS seems largely irrelevant other than that if the sarcoid was never diagnosed there might be confusion as to the diagnosis.

 

I detect the fell hand of voice-recognition software...

 

Indeed

 

This is a debate within sarcoid circles. There seem to be three approaches. to apparent or alleged remission. 1) Your sarcoid is gone and you are well, get fit etc. 2) Your sarcoid has gone in terms of classical signs but persisting systemic changes not apparent to current modes of assessment are giving you symptoms, but this is post sarcoid or post granulomatous (to be called CFS or not according to taste of physician) 3) You still have sarcoid but the granuloma are small in number and elusive so we can't find them.
An ongoing debate.......

Your claim of irrelevance is I think predicated on your assertion that it is all still sarcoid even in the absence of signs, which some sarcoid physicians would debate or deny with their reasons. They are not here to put their point. My question is whether, if they are right, that justifies a CFS/ME or fibro diagnosis. If it is all sarcoid my question is answered but many medics are not in agreement with that proposition.

(Incidentally a parallel that comes to my mind is covid vs long (post???) covid. The concept of immune hit and run....... )

The concept of post sarcoid should of course never be invoked because of failure to e.g scan properly, dogmatic dismissal of ACE or other inadequate reasons absolutely. Nor should CFS/ME be "invoked" or resorted to,rather than diagnosed. But a sarcoid fatigue which is truly post recovery may well exist and just saying "it's all sarcoid" is not currently persuasive to many physicians, so work is required on the nature of such fatigue. This makes the world of ME/CFS, post viral syndromes etc. of interest and possibly of relevance too and proper evaluation is always essential.

As with GWS vs ME/CFS it is important to weigh up similarities and differences across symptomatically similar conditions and - as to fatigue, exertion intolerance?/PEM, symptoms without signs - there are considerable superficial similarities between ME and sarc incl post sarc, which certainly cause me to question what they might have in common, esp post sarc. Conversely many in the ME/CFS community have been concerned to make differences clear in order to firm up the diagnosis of ME/CFS, which cannot be done it post sarcoid is being casually rendered as CFS. Saying it is all sarcoid does not serve elucidation in the presence of specialists who no longer "see" sarc if they can no longer see the sarcoid granuloma esp. if they consider CFS/ME, fibro, FND to be ready and waiting. Such a diagnoses may well be better than nothing at all, but it is not scientific medicine.

You may be right that it is all sarc but we need more proof and CFS/fibro is being diagnosed in sarc (current and "post".

These are my concerns.

 

Do we see PEM in these patients with fatigue that is diagnosed as ‘CFS’ post sarcoidosis or are seeing a confusion between the symptom chronic fatigue and ME/CFS?

 

To answer a slightly differnent point, patients are in fact being diagnosed with CFS and or fibro alongside ongoing established sarcoidosis despite the fact that fatigue and pain are long established features of the condition. This may be because physicians do not know how to treat such symptoms. I do not think this is based on much more than doctor's being flummoxed, well intentioned but not knowing what might be tried for such symptoms, which are admittedly vexing.

As to assumed post sarcoid, there is at least exertion intolerance, easy fatigability often myalgia. As far as I am concerned within CFS/ME cohorts there may be heterogeneity as to EI vs PEM, the more so along the course of the illness. I am not satisfied that we have a reliable PEM vs EI differential and many with active sarcoid could present a subjective case for PEM phenomena but it could be extreme EI. Colloquially it is PEM and long covid has been welcomed in to ME world without rigorous determination of exertional malaise. The Dutch muscle study showed post exertional phenomena but does that necessarily = PEM of ME/CFS? So in short I don't know if we can say either way.

I doubt those diagnosing CFS in sarcoid have much knowledge of the PEM:EI:chronic fatigue:Chronic fatigue syndrome:CFS/ME debates and nuances. I do think that when fatigue and pain have long been recognised as part and parcel of active sarcoid that to bring in CFS etc from the side is wrong but the post granulmatous state is puzzling. My belief is that we cannot effectively demand of sarcoid physicians that they recognise ongoing sarcoid when there are no more signs, but that that post sarcoid is well recognised and should not be assumed to be the same as CFS/ME though it may be similar. JE may be right that it is all in fact sarcoid but I doubt sarcoid docs will be persuaded, so post sarcoid or post granulomatous sarcoid is imo a workable compromise meaning the symptoms are taken seriously as is the association with sarcoid and possibility of ongoing sarcoid and research into them too. Let's face it for many CFS/ME is a wastebasket and if sarkies allow post sarcoid into the wastebasket then, as we already see it is as hort step for ongoing sarkies with myalgia and fatigue to end up there too.

I of course do not believe that CFS/ME shoudl be a waste basket and the best way imo is openminded awareness and where appropriate cooperation between the world of CFS/ME and "post" sarcoid but without (premature) conflation based on superficial assumptions which are never a good start for anything.

 

It is all muddle of semantics. Most doctors do not really understand the difference between a causal disease category and a syndrome category. When the time comes that we can answer questions about cause for all cases then terms like ME/CFS or CFS or fibromyalgia will have disappeared anyway. At present ME/CFS is a syndrome category that includes people for whom there is no obvious causal source of symptoms. We know sarcoid to be a particular form of long term dysregulation of immune activity, characterised by granuloma formation. In people with sarcoid the diagnosis of ME/CFS is unlikely to be helpful if only because there are good reasons to think the presence of a sarcoid history will change any predictions one could make about prognosis or response to treatment - the predictions that are the rationale for having a diagnosis.

So in simple terms, at present we will always be uncertain about the applicability of categories and when we are certain those categories will have been abandoned anyway. I personally think CFS and fibromyalgia are pretty unhelpful terms even now. EM/CFS is the better defined term for CFS and fibromyalgia provides almost no useful predictive information since nobody can agree how many people belong in the category to within a factor of a hundred fold.

 

I think I agree with quite a lot of what you say here. I have always thought that if a test is found for acohort of ME/CFS then that cohort will be removed form the larger group and given its own name , unless it happens to be actual myalgic encepahalomyelitis.

As to sarcoidosis I think many sarc.doctors will limit sarc. to sarc. which they can see and be tempted to apply CFS etc to those symptoms remaining after sarc has "disappeared". This I find disturbing esp since the term is now insidiously being applied to sarkies who have indubitable ongoing active sarcoidosis. Patients are themselves not familiar with he intricacies of causal vs syndromic categories and when they are given the diagnosis CFS they presume that they are being told that their symptoms are sth other than sarcoid, which the doctor may in fact mean but he/she does not esp in the case of active sarcoid have firm grounds to believe and which is against decades of established thought.