Discussion in 'General ME/CFS News' started by Amw66, Mar 16, 2018.
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Yikes, this report reads a lot like mine
Not too technically conversant re posting full twitter feeds
I worry that Jen Brea is taking the debate off track here.
The problem for people with ME is that they have a severe, real, ordinary disabling illness for which there is no known effective treatment - ME. OK, they might have some other illness and that is important but it is secondary and I am not sure it has anything much to do with CBT. I doubt that missing a diagnosis of Ehlers-Dalos is ever of much importance in the context of ME and although rare brain lesions can be missed they can also be over diagnosed.
More importantly, I do not think people with ME are missing out on useful treatments.
Jen asks: 'Diamox, Valcyte, Valtrex, Mestinon, Florinef, Beta-Blockers, Low-Dose Naltrexone, next gen anti-inflammatories – these are interventions can help some patients live MUCH a higher quality of life. Why don't NHS doctors have these in their toolkit?'
Because we have no reliable evidence that they work and they can certainly cause harm - same as CBT. We need a level playing field. There is no point in replacing one sort of bad science with another. I think Unrest is a very moving educational film but I worry if it is used to promote treatments that as far as we know do not work and whose use simply lines the pockets of physicians on the fringe of medicine. If the NICE committee gets asked why can't patients have these treatments they will just roll their eyes and sign off CBT and GET for another ten years of recommendation - and rightly so because we will have lost the only argument we have - reliable evidence.
I don’t think the issue is as much treatment for ME as it is treatments for whatever collection of things the patient happens to have.
I had doctors refuse to test for and treat my asthma “because CFS causes shortness of breath”.
Though, yes, LDN needs more study before it can go in any guideline.
Fludrocortisone is a treatment for dysautonomia with low blood volume (low blood volume is common in ME). Fludrocortisone saved my life. I was dying of dehydration and not able to regain weight, and with fludrocortisone I am just barely up into ok weight. Still dehydrated but a bit less so.
I am not going to comment on everything mentioned and don’t even know what they all are, but obviously nothing is “use for everyone with ME”, but use if indicated because of some particular circumstance.
While I agree with the sentiment that the effect of CBT / GET has been long lasting - I think it’s problematic to suggest that everyone in the U.K. is so much worse off that those in the US.
If you look at the fact that one of the best hospitals in the US (Mayo Clinic) and many insurance providers still recommend CBT and GET. Oh, except if you’re in the US you have to pay for the honour of these ineffective therapies, either via insurance or out of pocket. If I was seeing (anecdotally) many US patients getting better, and showing a demonstrably better QoL than their U.K. counterparts then I think there’d be reason for outrage. As it is - I simply don’t see that, and if anything, the flip side of being able to see doctors that’ll prescribe you anything is also a lot of patients getting sicker through unproven treatments - this is well documented on other ME forums / social media platforms etc.
Can’t we just accept that a core group of psychiatrists who happened to be British managed to influence treatment far beyond the country’s shores and accept that treatment in *all* countries is severely lacking, without resorting to denigrating a particular health system?
These issues of being fobbed off, of doctors refusing to investigate further, are universal.
I agree that Jen Brea is straying into territory outside her expertise here. As @Jonathan Edwards says, none of the treatments she mentions have been tested in a clinical trial for ME/CFS.
Until they are, we should be as wary of any promotion of any drug on the basis of 'it helped me' or 'it helped my friend', or 'my doctor uses it', as we are of claims that anything else helped, from LP to nutriceuticals to CBT/GET.
No treatment has, as far as I know, been shown in a clinical trial to be effective for ME/CFS specifically (except possibly Ampligen - I don't know enough about that).
For sure some treatments help patients for coexisting conditions like POTS or MCAS that affect some people with ME. It is right that PWME should be checked for co-existing conditions and those conditions treated, and that treatment may well help that person considerably, but that doesn't mean they can be claimed to be ME treatments.
Never heard Jen Brea swear before.
I do think that people with ME have significant issues in
accessing testing and treatment for other conditions which by being treated could improve function ( i think this is the gist of the Twitter feed) once an ME label has been applied
This point will only be made worse as MUS takes hold.
I have said before - from parents forums last year i knew of 2 teenage girls who developed cancer ( hodgkins lymphoma), one to stage 4, as their symptoms were put down to " just ME" .
To me, there is frustration that many comorbid conditions are not being looked for or treated, mainly due to GPs lack of knowledge, consultants views being 10 years out of date, and the lack of testing available.
Treating/ exploring these could make a real difference to the quality if life afforded to people.
I think one needs to make a distinction between the presence of additional illnesses ('comorbidities') and wrong diagnoses, as for the girls with lymphoma who presumably had lymphoma rather than ME.
I am not clear that there is any real value in specifically looking for other illnesses in people with ME just because they have ME. I am unclear what you mean by GPs lack of knowledge or consultants being ten yeas out of date. I am not aware that any very good data have emerged in the last 10 years elating to comorbidities in ME. Where there are reliable tests they are usually available, even in the NHS, if with a delay.
The treatments that Jen Brea mentions specifically are all off-label medications that have been proposed as useful in the context of ME but without good evidence. I don't think the argument against CBT is that it stops you getting valcyte.
That's the end of the CNN Hero nomination. They will go through her Twitter Feed and decide not to nominate her. They want squeaky clean nominees.
Back to Alem Mathees for nomination.
How will we ever get studies to test these drugs when nobody wants to fund them? I get a bit sick of that line 'there's no clinical evidence' of course there isn't, research studies cost a lot of money and nobody cares enough about ME to do them! The research that does take place seems to only focus on the cause, not possible treatments, with the exception of Ritux.
There is quite a lot of anecdotal evidence that suggests LDN can be really helpful in ME, I'd try it tomorrow if my GP would prescribe it to me. I would buy it myself but I worry about the rest of the medication I take.
Aren't drugs prescribed off label for other diseases @Jonathan Edwards? Many of here will be dead before theses trials get done. I'd happily experiment to get a bit more QOL back before I die.
Even if the NHS just tested and treated us for POTS it could make a substantial improvement to many people's lives.
I don't think Jen is attacking the NHS per se, she is attacking the treatment of pwme within the NHS which it deserves, I think Bob would've agreed.
My recollection is that the teenage girls have ME. Both had glandular fever as triggers and EBV is implicated in subsequent cancer. A bit like the chance Rituximab where the patient had ME and cancer.
Swollen tender lymph glands were not examined as this was " an ME thing".
Sadly there have also been gallbladder issues/ gut issues / thyroid issues/ POTS which have been pretty much dealt with as MUS as the paediatric guidance is not up too much ( POTS is changing though)
Comparison ofthe international primer with the english one is enlightening. In Scotland there is no such paediatric guidance- tends to defer to England .
I think it is worth being careful about these stories. EBV is not implicated in cancer except in two very rare malignancies. After all we all get EBV pretty much. ME is defined as a set of symptoms not explained by some obvious other condition. Lymphoma produces a severe fatigue syndrome so it is pretty impossible to diagnose both ME and lymphoma. It is also very hard to know quite what it means for EBV to be a trigger. Doctors may say this just because the EBV antibodies are positive. Individual anecdotes like this do not help us I think. People with rheumatoid arthritis get lymphomas missed because RA causes lymph node swelling. There is always a horror story to fit every concern.
I am not convinced that this has anything to do with CBT.
I also think it may indicate the down side of the popular idea that ME is linked to all sorts of symptoms and syndromes outside the core concept of exertion intolerance. It is because of this idea of a link that things are 'put down to ME'. If we focused on ME itself as the problem - the exertion intolerance and PEM - then maybe doctors would not get lazy about not examining lymph nodes. I actually think it is probably completely irrelevant whether or not ME is associated with swollen lymph nodes. They are not the problem and the idea of association is more likely to cause diagnostic confusion than anything else.
Studies will get funded if they look well grounded. The problem is that the physicians who have been trying out these drugs have not gathered and published preliminary data in a form that would ground full studies. I know all about this because I had to do that for rituximab and I spent ten years of my life slogging away at that and nothing else. If I was in charge of a big funding body I would not fund trials of the drugs Jen mentions because the preliminary data are not there. Ampligen is maybe an exception but I find it very difficult to see a valid scientific basis for the drug which is concerning.
So patients need to insist to their physicians that if they are tried on open label drugs that the findings are to be published in as useful a form as possible.
So why have the physicians using it not documented that properly?
Not much these days except in very rare diseases where trials cannot be done. Or as I did for rituximab - with formal publication.
But would it? My understanding is that orthostatic tolerance is an intrinsic feature ME and whether or not it officially falls under the definition of POTS may be of no great significance. POTS is not a disease, just a particular pattern of response. If it does occur in ME we need to know whether treatment should be the same as in other situations, if indeed there is proven treatment.
Why does the NHS deserve criticising if there is no proven treatment it can offer? Why is it worse than a system where people are offered treatments that probably do not work? The NHS is appalling on basic supportive care but my guess is that you do not get any of that in the US. I doubt free domiciliary visits are on the agenda.
Thanks for clarifying
My post had little to do with CBT- more that other physical issues could be treated and so improve overall functioning.
However when these are not picked up/ given credence it is all back to " all in your head" .
Separate names with a comma.