MEA website survey: Should doctors be allowed to prescribe experimental treatments? (June 2017)

[Jonathan Edwards]

MEA website survey: Should doctors be allowed to prescribe experimental treatments?

This month's MEA website survey is asking whether doctors should be allowed to prescribe treaments such as antiviral drugs and immunological treatments - even though they do not have a license for use in ME/CFS and are not recommended in the NICE guideline on ME/CFS

More background information here:

http://www.meassociation.org.uk/201...and-speculative-drug-treatments-05-june-2017/

MEA website poll:

• 
  Should doctors be allowed to prescribe speculative or experimental forms of treatment - e.g. antiviral drugs - for people with ME/CFS?
  • Yes - definitely (49%, 83 Votes)
    
    
  • Yes - in some circumstances (41%, 70 Votes)
    
    
  • Not sure (4%, 7 Votes)
    
    
  • No opinion (0%, 0 Votes)
    
    
  • Probably not (3%, 5 Votes)
    
    
  • Definitely not (3%, 5 Votes)
    
    
    Total Voters: 170

You can vote via the home page on the MEA website:

www.meassociation.org.uk


Dr Charles Shepherd
Hon Medical Adviser, MEA

Dear Charles,
I wonder if such questions need to be more specific and also be careful to avoid implications that are not strictly correct.

Physicians in the UK as I understand it can prescribe anything licensed for something for anything else. Drugs not licensed for anything are obviously an issue on safety. I could prescribe rituximab for people with RA simply because it was licensed for something else. So doctors CAN prescribe experimental treatments. The question tends to imply that they cannot.

There is quite a different issue about who pays. With rituximab I paid for £10,000 worth to begin with, out of my own pocket. I think a physician sufficiently committed to demonstrating that a new treatment works can be expected to do the same to be honest. That £10,000 has given me greater pleasure than a few expensive holidays in the tropics. I see no reason why a national insurance scheme should pay for treatments that are not proven. I have serious misgivings about asking patients to pay out of pocket, although I admit to having done that myself in about three cases. I see no reason why a private insurer should cover unproven treatments because they have to provide value for money for everyone subscribing.

I am pretty sceptical about the idea that expert specialist physicians should be allowed to use treatments for special cases on the grounds of 'clinical judgement'. To me that went out in the 1980s, at least for common disorders (like ME/CFS). We came to realise that we did not know what we were doing.

The much greater problem that I see is doctors selling phoney treatments to people who admit they are desperate. If there were more effective sanctions against trying this and that and pocketing the profit I think there might be a bit more money available to fund decent research.

 

[charles shepherd]

Hi Jonathan

The tool that we use for preparing this monthly MEA website survey means that the question we use has to be very short in length - about 90 characters max

This often means I have to simplify the question on what can be quite a complex issue - as is the case with this question

This is why I normally provide some fairly comprehensive background information to our website questions - and this one sets out some of the main reasons why most doctors are reluctant to go against a NICE guideline
recommendation on ME/CFS and prescribe a drug that is not recommended by the NICE guideline on ME/CFS

We can, of course, use our clinical judgement and prescribe something like amitriptyline for pain relief in ME/CFS (which does not have a product license for this purpose) without any problem

And as I'm sure you are aware, there are a number of doctors here in the UK who are/have been willing to prescribe antiviral treatment for people with ME/CFS

But I would stick to my point that the prescribing something like a powerful antiviral drug on the basis of clinical judgement in ME/CFS should only be done by a physician who:

(a) understands the research evidence upon this treatment is based
(b) has experience in using this type of medication
(c) is in a position to monitor progress,

Sadly, anecdotal evidence indicates that this is not always the case…

See you next week at LSHTM!

Regards
Charles

 

[btdt]

And here in Canada at least there should be a rethinking of how medical tests are covered. There are tests available that might uncover abnormalities that could be useful in providing information in assessing what has gone wrong -- and therefore what treatment might work. These tests are not covered (here I'm talking about OHIP-Ontario health insurance) but I think it applies to all provinces.

I am curious as to what test you would like and can't get covered by OHIP? I know of two lyme test done in the states and a mold test also done in the states.. is there a test available here that you can't get covered by OHIP? I have not heard of that...

 

[Snowdrop]

@btdt

I would like to answer your question properly and directly. But the truth is, I can't really say. What I mean is After reading many posts over the years there have been people who stated that they had this or that test (and had some positive finding) and were basing their self treatment somewhat on those findings.

I was thinking that perhaps some of these (now totally forgotten by me) tests might be worth pursuing, based on a combination of what I've read when others here discuss science research and my own understanding of my symptoms and illness course. At one point I downloaded (or bookmarked a site that listed all the lab tests that were available and which ones OHIP covers (sometimes there are caveats as to when a test will be covered). I have the list somewhere but haven't been able to dig it up.

When I consulted the list in the past while reading here there were tests that were not covered but as I said I can no longer remember which ones they were.

My GP who I have no seen in a while, colours inside the lines when it comes to following protocol. I have only ever been able to get really standard tests like CBC, CRP, thyroid panel, some vitamin levels (as ones I can remember off the top of my head).

To answer the last part I've never been looking for a Lyme test or mold. The tests I was referring to were a little more specific but as this is not in my wheelhouse I can no longer remember the details.

 

[btdt]

@Snowdrop I have had a couple of doctors not fibro doctors.. I don't even know what a fibro cfs doc would be at this point....
who have done testing outside the box... none were helpful...

this is new..
I think
http://www.survivingmold.com/diagnosis/lab-tests
that one tells how it works to keep us sick ormake us sick

this is the test page
http://www.survivingmold.com/diagnosis/lab-orders

well one of the test pages... I am sure ohip will not cover them if they are new ... apparently ohip does not even cover a tested test for lyme... forget mold.

and this could all be wrong...
I don't know I am talking in another thread with a person who seems to know science more see what she thinks...

Do you have a doctor who is to be treating your cfs... what sort of doctor is it?

 

[Snowdrop]

@btdt
I was diagnosed by a rheumatologist here in Toronto with Fibromyalgia. But no one I've found either GP or specialist thinks ME is anything other than psychological.

The tests that I referred to I think are different from the mold and lyme tests that you again mention. I have not looked to have those tests. I am unclear how useful they are in the sense that they are testing for the right thing and that they have a really high degree of accuracy (I think this is called sensitivity and specificity).

There are ever so many tests out there in the world OHIP only covers a portion. Here is their list:

http://www.health.gov.on.ca/en/pro/programs/ohip/sob/lab/lab_services_sched_01_19990401.pdf

I can't find the original document I had that enlisted a large number of tests available and then indicated which ones were covered. It was this list I was viewing when reading about others adventures in the land of diagnostic medicine.

It's all a moot point for me. I would have difficulty getting to my dr and there are as yet no definitive tests that will confirm what it is that causes me to be this sick.
Other people had used there test results for self treatment ideas/strategies.

I await medicine to catch up to this illness.

 

[Alvin2]

Very interesting list, though its 18 years old. I was diagnosed by a Toronto based physician, PM if you want more info

 

[anni66]

I don't think you have read what I have written about antiviral medical in the background information:

I take the view that there are other situations where a more flexible approach should apply.

For example, in the case of antiviral drugs such as valganciclovir, where there is some evidence of benefit from clinical trials, and from physicians in America who use this drug on selective cases, I take the view that infectious diseases specialists who are familiar with the use of this type of potentially toxic antiviral medication should be able to do so in carefully selected patients with ME/CFS where there is both clinical and virological/immunological evidence to support a decision to do so.

Again, there is no need to be rude to make your point….

The problem is that few gps/ consultants have the gumption/ inclination to firstly understand/ know enough about the specifics in a multi system condition . There are clear cases of initial onset from viral infection with reactivation which result in shrugged shoulders and if you are fortunate a sympathetic smile. God help you if you have POTS or other comorbid conditions , and mention of HPA axis dysfunction and effects on sleep and thyroid gets you funny looks. if you had shingles following chickenpox repeatedly antivirals are standard - it seems that logic is wanting the moment an me/ cfs diagnosis is made. Why for example are there no subclinical groups generally to enable both research and treatment to be targeted - or perhaps the wide net enables the psychological research to always have a cohort that shows " improvement" albeit of diminishing statistical relevance. Sorry, i can' t help but feel cynical

 

[anni66]

Yes, vitamin B12 has a pretty good safety record - but that is not the problem

The potential problem here is that people are sometimes being prescribed vitamin B12 for fatigue and sensory symptoms in ME/CFS (and without ME/CFS) without proper checks being done to make sure that they do not have pernicious anaemia - an autoimmune condition which can cause fatigue + sensory symptoms and lead to serious neurological complications involving the spinal cord if not identified, monitored and properly treated on a life long basis

As active B12 is generally not tested for , pernicious anaemia has slipped through standard tests. With 10 mins / patient too much emphasis is put on test results and not on the presenting picture.