A thread on what people with ME/CFS need in the way of service

[V.R.T.]

Sadly not.

Alas

 

[V.R.T.]

ve read multiple stories of patients being held in hospital while for example antihistamines were withheld from them. This can seriously harm ability to get the nutrition needed and cause a flare up of symptoms

Whether we call it MCAS or think its a part of MECFS that doesn't need to be attributed to another condition, this is a concern I have, because I know severe people with very bad allergic symtoms who rely on those meds.

I personally wouldn't want my ivabradine taken away from me either. I don't fancy going back to my heart playing technical death metal blastbeats every time I crash or stand up.

 

[Robert 1973]

Provision of realistic but sympathetic advice on prognosis, and advice on self-management based on the collective experience of other patients.

I’m not sure this is quite the right wording. “Based on collective experience” could be interpreted to include some left-field ideas that have gained traction with some patient groups.

On prognosis, I wonder if more detail should be included in the explanatory part – ie recovery from post-viral syndromes which meet dx criteria for ME/CFS at six months is common within 2 years but unusual thereafter. Or whatever the most reliable epidemiological data currently tells us.

Typo in bold:

Neurology seems most relevant but rheumatology has accommodated a number of conditions the do not easily fall into a specialty category, such as chronic pain and muscle disease, especially where there may be immunological features.

 

[Utsikt]

If you have allergy symptoms, surely you can get antihistamines for that? And if you have substantial tachycardia and palpitations, low does beta blockers might be in order? That sounds like trying to address symptoms, which would be fine.

 

[Eleanor]

Neurology seems most relevant but rheumatology has accommodated a number of conditions the do not easily fall into a specialty category, such as chronic pain and muscle disease, especially where there may be immunological features.

but neurologists wedded to an unevidenced explanation of ME/CFS as psychogenic/"functional" should be avoided.

 

[forestglip]

Physicians leading ME/CFS services need to be constantly updated on developments in related disciplines and will benefit from ongoing contact with a range of other clinical problems that can inform ME/CFS care.

This is unclear. What does it mean for physicians to be in "contact with clinical problems that can inform ME/CFS care"?

Beyond these measures based on licensed general indications off-label prescribing should not be part of service provision unless as part of carefully planned controlled studies capable of providing useful information about wider use.

Add comma before "off-label"

For most drugs and procedures commonly used off-label for ME/CFS we have good reason to think any benefit is inconsistent and limited at best and probably non-existent (most are based on implausible theories without any reliable efficacy data).

Add comma after "ME/CFS"

9. Provision of realistic but sympathetic advice on prognosis, and advice on self-management based on the collective experience of other patients.

I'm not sure this is quite the right wording. “Based on collective experience” could be interpreted to include some left-field ideas that have gained traction with some patient groups.

Agreed. This part stood out as the easiest to misunderstand. I think it should just say or summarize the advice right there, instead of allowing the reader to infer. The full text part goes into a little more detail, but I think it should also be clear in the list since that's all many will read.

The more detailed section:

In our view it is essential that advice should be based purely on the collective experience of other people with ME/CFS and not on speculative theorising on energy metabolism, or autonomic or adrenal function. Simple advice on judging activity limits based on personal experience is all that is justified.

Maybe:

9. Provision of realistic but sympathetic advice on prognosis, and advice on self-management primarily focused on judging activity limits.

 

[Felis Catus]

If you have allergy symptoms, surely you can get antihistamines for that? And if you have substantial tachycardia and palpitations, low does beta blockers might be in order? That sounds like trying to address symptoms, which would be fine.

It might depend on the location and doctors. I didn't manage to get any of that.

For example, antihistamines can be refused on the basis that they could increase fatigue, and tachycardia and palpitations could be ascribed to anxiety and fears.

 

[Utsikt]

It might depend on the location and doctors. I didn't manage to get any of that.

For example, antihistamines can be refused on the basis that they could increase fatigue, and tachycardia and palpitations could be ascribed to anxiety and fears.

E.g. desloratadine is non-sedating, like most third generation antihistamines. The sedating ones (first and second gen) could be taken at night to aid sleep if that’s a concern.

Wrongful diagnosis of anxiety and fear is an issue, but a different question than if the meds could be prescribed for the right symptoms by a competent practitioner.

 

[Casterofspells]

If you have allergy symptoms, surely you can get antihistamines for that? And if you have substantial tachycardia and palpitations, low does beta blockers might be in order? That sounds like trying to address symptoms, which would be fine.

I’m sorry but I think this is too optimistic. I’ve personally experienced this for example.

MCAS doesn’t always show up in tryptase tests for example and most clinicians don’t recognize it at all. Many patients require quite high doses of antihistamines which is standard according to Afrin but not recognized either. So it’s far from a foregone conclusion.

Ivabradine will often be exchanged for beta blockers which in turn then aggravate mast cells (which is well documented especially in asthma but rarely recognized) etc pp

It’s a real issue and only one example.

 

[Felis Catus]

E.g. desloratadine is non-sedating, like most third generation antihistamines. The sedating ones (first and second gen) could be taken at night to aid sleep if that’s a concern.

Wrongful diagnosis of anxiety and fear is an issue, but a different question than if the meds could be prescribed for the right symptoms by a competent practitioner.

I understand that but I told you something that has happened.

I think this conversation started by someone raising concerns about medications being denied to the hospitalised patients. I don't know how someone in that state is supposed to complain and find a practitioner within the hospital who would prescribe them the medications, especially if their colleagues have already refused it.

 

[Utsikt]

I’m sorry but I think this is too optimistic. I’ve personally experienced this for example.

I’m sorry that has happened to you. But if practitioners won’t prescribe third gen antihistamine due to concerns about fatigue (which only about 1 % report in trials), then nothing we can do will change their minds. And the issue wouldn’t be that it says somewhere that off-label medications shouldn’t be used, it would be general incompetence.

MCAS doesn’t always show up in tryptase tests for example and most clinicians don’t recognize it at all. Many patients require quite high doses of antihistamines which is standard according to Afrin but not recognized either. So it’s far from a foregone conclusion.

Ivabradine will often be exchanged for beta blockers which in turn then aggravate mast cells (which is well documented especially in asthma but rarely recognized) etc pp

It’s a real issue and only one example.

MCAS is exactly the kind of speculative pathology we would like to avoid - and because it’s not taken seriously by most practitioners I don’t understand why it isn’t easier for everyone to call the symptoms what they are, and prescribe medications for those symptoms according to normal indications.

Afrin believes mast cells cause spontaneous human combustion (source). Perhaps he isn’t the best source of information..

I understand that but I told you something that has happened.

I think this conversation started by someone raising concerns about medications being denied to the hospitalised patients. I don't know how someone in that state is supposed to complain and find a practitioner within the hospital who would prescribe them the medications, especially if their colleagues have already refused it.

But we are discussing a hypothetical future situation where the ME/CFS patients would be under the care of ME/CFS specialists, that presumably have some control over which medications they are prescribed (and would prescribe them for allergies etc. and not MCAS). And staff at other departments would be expected to consult them before making changes.

Emergency situations would be different, but how would we be able to affect those?

 

[Suffolkres]

If you have allergy symptoms, surely you can get antihistamines for that? And if you have substantial tachycardia and palpitations, low does beta blockers might be in order? That sounds like trying to address symptoms, which would be fine.

Beta blockers are contraindicated in people with slow heart rate or bradycardia like my husband!

 

[Felis Catus]

But we are discussing a hypothetical future situation where the ME/CFS patients would be under the care of ME/CFS specialists, that presumably have some control over which medications they are prescribed (and would prescribe them for allergies etc. and not MCAS). And staff at other departments would be expected to consult them before making changes.

Wouldn't allergies be dealt by a GP or dermatology or gastrology rather than ME/CFS, and tachycardia and palpitations by cardiology, maybe GP?

My understanding is that the ME/CFS specialist wouldn't be prescribing anything because there's nothing approved to prescribe.

 

[Utsikt]

Beta blockers are contraindicated in people with slow heart rate or bradycardia like my husband!

If they have a slow HR they hopefully won’t be prescribed it for having a high HR!

Wouldn't allergies be dealt by a GP or dermatology or gastrology rather than ME/CFS, and tachycardia and palpitations by cardiology, maybe GP?

My understanding is that the ME/CFS specialist wouldn't be prescribing anything because there's nothing approved to prescribe.

My impression was that they would be able to prescribe medications as indicated for common symptoms (so not for ME/CFS per se). Perhaps that is wrong.

If a cardiologist prescribed beta blockers etc that would be even more reason for a random hospital doc to not discontinue them. Same for an allergist prescribing third gen antihistamines.

 

[Suffolkres]

If they have a slow HR they hopefully won’t be prescribed it for having a high HR!

My impression was that they would be able to prescribe medications as indicated for common symptoms (so not for ME/CFS per se). Perhaps that is wrong.

If a cardiologist prescribed beta blockers etc that would be even more reason for a random hospital doc to not discontinue them. Same for an allergist prescribing third gen antihistamines.

Not so!
Silo thinking and treating a hypothetical typical patient presenting with heart arrythmias. ...
Beta blockers took heart pulse to low 30s.. not good.

 

[Jonathan Edwards]

This is gonna get a lot of (especially severe) people intro trouble. I’ve read multiple stories of patients being held in hospital while for example antihistamines were withheld from them. This can seriously harm ability to get the nutrition needed and cause a flare up of symptoms. So it should at least include a clause of continuation of formerly effective treatment even if off label. Staff there love to go: “let’s first stop all your medication and see if that fixes things” in my experience which can cause real and immediate harm.

Plus to lend a termdeveloped in the aids crisis: isn’t there a right to try? Like shouldn’t patients have the chance to trial LDN or LDA even before big trials are finished for example?

Withholding medicines already prescribed is always something to be very cautious about. The idea, however, is to suggest a format for instigating treatments and unless there are normal indications I don't accept a need to use medicine off label. I have not seen any evidence for antihistamines being of use to assist nutrition. I know there are stories about patients where this is claimed but there are stories about all sorts of things that are unlikely to have any real causal basis. I am pretty sure that we are going to hear that histamine blockade has no effect in Long Covid. If it had an effect i think we would have heard by now.

People have a right to seek practitioners who are prepared to prescribe drugs off label but since we are talking about a government funded system and good evidence for these drugs being useeless or worse than useless I don't see a justification for prescribing them as part of an NHS service.

As far as I know the drugs that worked for AIDS were developed with a specific biological rationale and tested in preclinical studies before release. They were used before formal licensing maybe but with good preliminary evidence of efficacy. That is what I did with rituximab for rheumatoid and would be acceptable. Off-label prescribing of the sort we have now is something quite different. If people with AIDS wanted to try unevidenced things they would have been entitled to look for someone who might offer them but I don't think any government funded service provided such things and rightly so.

 

[Jonathan Edwards]

This is unclear. What does it mean for physicians to be in "contact with clinical problems that can inform ME/CFS care"?

It will be unclear if you are not a physician, I admit. It means that expertise in differential diagnosis (which is the main requirement) depends a lot of seeing people with other diagnoses to see the contrast. It also means that when you have a difficult decision on management with one disease it is of great value to have come across similar, or slightly different decisions in other contexts. A tennis player who wants to beat Djokovic would do well to spar with Federer, Nadal and Murray and get an idea of what unexpected things can land in his end of the court.

I see a crucial part of this service as being ongoing education of professionals of this sort. If you have a disease you have no idea how to manage it must be useful to have ongoing experience of other diseases where there are clues as to what to do. A physician being stuck in an 'ME/CFS service' in a community-based unit, maybe doing some general practice the rest of the time is not going to make any breakthroughs. They are pretty unlikely to pick up any unusual diagnoses masquerading as ME/CFS.

 

[Suffolkres]

It will be unclear if you are not a physician, I admit. It means that expertise in differential diagnosis (which is the main requirement) depends a lot of seeing people with other diagnoses to see the contrast. It also means that when you have a difficult decision on management with one disease it is of great value to have come across similar, or slightly different decisions in other contexts. A tennis player who wants to beat Djokovic would do well to spar with Federer, Nadal and Murray and get an idea of what unexpected things can land in his end of the court.

I see a crucial part of this service as being ongoing education of professionals of this sort. If you have a disease you have no idea how to manage it must be useful to have ongoing experience of other diseases where there are clues as to what to do. A physician being stuck in an 'ME/CFS service' in a community-based unit, maybe doing some general practice the rest of the time is not going to make any breakthroughs. They are pretty unlikely to pick up any unusual diagnoses masquerading as ME/CFS.

My point in suggesting an experienced physician who can separate sheep from goats comorbidity and coexisting conditions sub sets.

 

[Jonathan Edwards]

MCAS doesn’t always show up in tryptase tests for example and most clinicians don’t recognize it at all. Many patients require quite high doses of antihistamines which is standard according to Afrin but not recognized either. So it’s far from a foregone conclusion.

I have looked at this over a long period and I don't think Afrin has provided a good case for a concept of MCAS. Afrin is very much out on a limb on this. As far as I am aware the allergy category is all we need when it comes to indications for antihistamines. There is a huge amount of unreliable hype around this area.

 

[Holinger]

Withholding medicines already prescribed is always something to be very cautious about.

My experience is that in a hospital setting they will ask who diagnosed you with ME/CFS and who is your current doctor. They will not withhold medications if you have a respected specialist in your corner. Which is a problem because a lot of people don’t have that and then some doctors in a hospital tend to trample on you as if they know much better. I think a specialist Me/Cfs clinic/hospital in the uk would probably help this situation a great deal.