United Kingdom: National Inpatient Centre for Psychological Medicine (NICPM)

@Tal, just to put you in the picture, you'll be aware now at S4ME is a forum for discussion of the science around ME. So we don't just want to hear "it worked really well, and hey I'm cured!", we want to hear about specific medications and symptoms and treatments and everything. We want to work out whether we too could enjoy in the miracle recovery you enjoyed.

Right now, your message seems to be that recovery is only possible for those who go to the Leeds Centre. Most here don't live in Leeds, we don't even live in the UK, so knowing that the Leeds centre can work mysterious miracles does not help us one jot. But learning about exactly what treatment elements helped you does. And also finding out whether your complaints are anything like ours.

Some of the members here are former doctors, psychological and scientists. We want to know specifics.

I'm sure you'll want to help all of us here by sharing every aspect of the treatment that turned you from bedbound to recovered, so others can recover too. I know I would!

 

Best wishes to @Tal, and I'm really pleased to hear that they're doing better, but I do also have a concern that some of the information they were given at the Leeds centre may have been a bit manipulative, and made it difficult for informed consent to have been given. Some of it reads like medical myth-making to me, but I know that different people have different levels of concern about things like that, and that it might not be an issue Tal really wants to explore now. It's always difficult working out how probing to be in situations like this.

 

I'm keen to hear more too. There's just something about the tone of your posts . . . I dunno. It feels like someone really dug the Leeds centre's marketing spiel. After eight months on that ward, maybe that's to be expected.

This may be incredibly rude and presumptuous of me (it is!), but it's the same kind of evangelistic language I see around the Lightning Process and Mickel Therapy. I get that you'd speak effusively about something that helped, but beyond antipsychotics I can't see how your treatment is different from standard NHS care (which is pretty poor). It sounds like CBT, GET and very, very powerful drugs.

People often claim to be cured or massively improved by one thing or another, but it falls down when people ask 'how'.

I'm not saying it didn't work for you, Tal, but the science doesn't add up and those are some *serious* psychological medications you're on. My best friend has bipolar, and what's clear is that his illness can present as very similar to mine on the surface, but it's absolutely not the same thing. My partner's mum has MS which seems very similar to ME, but again, it isn't.

My concern is that they are treating you with antipsychotics and antidepressants--as if you had bipolar, schizophrenia or PTSD--and yet you don't appear to have had an MRI despite your headaches. There could be something seriously biologically wrong that's just being masked by those medications. I'm sure they told you their investigations were extensive, but the NICE guidelines encourage fewer investigations rather than more.

I also echo the comment others have made that your focal symptom seems different enough to ours to warrant further investigation. Most of us complain about PEM and its devastating effect first and foremost. While headaches do occur in ME, I would want to rule out anything potentially progressive or dangerous too.

 

A certain amount of improvement is to be expected by being removed from the home environment and having round the clock care, especially if you were still having to worry about ordering food, meal prep, whether you will have the energy to eat if you wash yourself etc.

It sounds as if for the first three months you did nothing, they took care of your every need? That bit would certainly help me, a break from worrying about the endless washing, shopping lists, meal prep, changing bed, tidying, dusting, paying bills, when I'd next be able to shower or wash hair etc, etc the list is endless. Give me 3 months off with personal care and I'm sure I'd improve quite a bit, I couldn't sustain it in the real world though. I imagine you were also restricted in use of tv and computers, were these allowed at all?

I don't think you said you have completely recovered @Tal, to what degree do you think you have improved, and how long have you been back at home now?

I do wish you the very best, as we all do, and that your health contiues to improve.

 

I had a terrible experience in a neurology ward which left me so distressed I couldn't bear to think about it for years BUT I felt better when I came home because for 14 days I hadn't had to make any meals, tidy up, get kids ready for school, sort out squabbles and so on. I was very frustrated because none of their "treatments" did anything but lying on a bed reading all day did.

 

Is Tal still with us?

 

That's interesting. I sometimes have to rest aggressively for a few days to get out of a crash, but I sometimes forget that that is not as easy for everyone to do. I have no kids, no job, no money problems and a very understanding partner who does all the cooking and cleaning, a restday really means a restday for me. I can imagine never really getting out of a crash if you have all these responsibilities.

 

Hope you have been resting up Tal and feel a little more able to answer questions if you are up to it.

I don't know if what you have been told by the clinic is entirely the truth and that concerns me as a patient.

Let me explain why I am saying this. I'm been sick for over 30 years. I've seen a lot of treatment regimes used both privately and in the NHS to try and treat patients and I have taken part in some of them.

Don't want to put words in your mouth but what I am picking up (and I may be wrong) is that the team treating you have a belief that your ME was caused by "CNS over arousal" and that the drugs calm down that system.

They have also told you that there are no tests for this theory.

Is that actually true though? If you CNS is over-aroused then my non-scientific patient brain tells me that it must be producing something. I had a quick look and found these types of things that maybe an over-aroused CNS could be producing

acetylcholine, norepinephrine, dopamine, histamine, and serotonin

These things are testable. As an example I have had a test for serotonin (which was normal).

The other things listed there may well have been tested in ME and CFS in a research setting and there may be papers on this which would support or disprove the claims made at the clinic.

As you probably know people with ME are looking at co-morbid conditions and other reasons for their disease. Some of these may involves tests for what your clinic would consider CNS over arousal. POTS come to mind and also MAST cell syndrome.

If there theory was correct then we would expect to see if used as a treatment for diseases where there is a proven CNS over arousal and tests that show exactly what is being overproduced.

I'm all for evidence based medicine. We may not have the data on the drug treatment they use for ME but we have some tests and treatment for other diseases - and maybe some evidence from research in CFS.

It may be that this all adds up somewhere. I don't know enough to make a judgement. However from what you have written it appears that someone is not explaining this very well to you or does not have the evidence as there is a lot more that they could be saying about CNS arousal and testing in CFS and other conditions.

 

I was put on Sertraline for stress some time back. It certainly affected my central nervous system, but instead of calming it down it sent it into overdrive. I've never been so buzzing. Sense of touch, smell, hearing, were all enhanced, but in a horrible way, it was very unpleasant. I felt like I was in an electric chair. It was a tiny dose. I stopped taking it of course, I was massively relieved when it wore off. Anyway, no doubt that the drug affects the CNS just might not work the same for all patients. Glad to hear this drug helped @Tal though.

 

Like everyone else, I am pleased to hear that Tal's health has improved, but I would endorse Joel's view that Sertraline should be viewed with suspicion.

Many years ago I was prescribed sertraline along with another drug and told that the sertraline was effectively to enhance the antiviral properties of the other.

The effect was the opposite of that intended. I have not been ad well since.

It would be interesting to know what trial evidence there is to support the use of sertraline in ME.

 

A quick Google of Sertraline for ME shows some worrying side-effects. In nearly every case, it seems the clinician is trying to treat co-morbid depression and not the core problem itself. In some, the clinician simply seems to be treating 'CFS' as though it is depression.

I don't think it can be regarded as a useful treatment. Given that serotonin can increase fatigue, I also think it could have the opposite effect on many people. Where antidepressants have been used successfully, it's at smaller doses designed to help sleep and pain. Even then, it's usually tricyclics, which act on adrenaline as well as serotonin, which might be why they work better.

 

I wonder if this article in the Telegraph is perhaps to blame for so many doctors trying Sertraline for ME? https://www.telegraph.co.uk/lifesty...ors-diary-extra-chronic-fatigue-syndrome.html

 

Not in my case. That was in 1991. It takes along time for lessons to be learned.

 

Yes, I've found more info (plus a historic comment from Charles Shepherd) here: http://www.ibsgroup.org/forums/topic/42878-sertraline-treatment/

Perhaps I was too rash in denouncing this one, although I'm still concerned about pairing it with an antipsychotic (usually done only in schizophrenia or bipolar). CS raises the very valid point that we can't know which patients have up- or down-regulated serotonin, and which patients have normal levels. It also remains, as far as I'm concerned, just a theory like any other, until proven otherwise.

It stands to reason that CNS dysfunction would effect neurotransmitters too, but I'm not sure it gets to the root cause--and it could even be masking the problems. Alcohol might make many of your symptoms go away, too, if you can tolerate it--but it's not a cure.

 

There's also this: https://www.ncbi.nlm.nih.gov/m/pubmed/23335743/

So it's possible the SSRIs are having an effect on enteroviruses, too.

 

Yes I often think this, people can smoke cannabis or do heroine or get drunk to deal with symptoms of x y and z but all you are really doing is swapping symptoms. I sometimes think medicine is no different , especially when it comes to SSRIs. Also in clinical practice the SSRI is almost never measured for efficacy against just doing nothing and waiting.

Trials may claim to do this but big pharma trials are notorious for fiddling results on their SSRIs drugs and being selective about which studies never get published and which ones do.

 

It is interesting to note all the anecdotal reports of adverse effects. This would suggest either that there exists a clear subgroup for whom sertraline is beneficial, or clear warning of risk must have been given to obtain informed consent for treatment.

 

Or doctors are kidding themselves that they're Jesus Christ of the Antidepressants!

I've now read Dr Smith's rationale for ADs in ME, and it's a mess. Obviously disheartened by some contradictory findings about muscle dysfunction (which fly in the face of more recent CPET studies and others), he's run off in despair to saviour Sir Sly Weasely, and been convinced that it's all basically central sensitisation/chronic stress tricking us into thinking we've got a virus. But really the antiviral response is targeted against the intolerable elements of our lives, and a dangerous mix of tricyclics and SSRIs is the only way to fix us!

There's very little evidence in it, and he firmly believes Ramsay ME is something entirely different to what he's dealing with. On that last point he might be right though--except that I don't really believe everyone could be misdiagnosed. He doesn't seem to understand the symptoms, though, and describes deconditioning with serious psychiatric withdrawal rather than ME as we'd understand it today.