New patient from the UK: CFS specialist or neurologist?

[paulie]

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

Out of pure chance someone I follow on twitter shared it. Interesting for me as I am as yet undiagnosed but have just been referred to a clinic which does CBT.

My doc gave me two choices of neurologist or clinical psychologist/psychiatrist. I was pretty confused as to why she was recommending the latter. I opted for neurologist but for some reason she ignored that and went for the clinical psychologist/CBT route. Bit annoyed about this really but very unsure as to which one to go for anyway. The CBT clinic has sent me a letter saying they need some blood/urine tests done first. I am wondering what those tests will be and whether they are of any use. i.e. will they be standard tests like thyroid checks I have done already. Or will they be looking for infections which I haven't had done.

I was thinking the neurologist would be the sensible path but then I think maybe they would just confirm my leg twitching is not related to something more serious like MS or ALS and that it is (as I suspect) 'only' fasciculation syndrome (and so it wouldn't really get me anywhere).

Always find it confusing and frustrating when doctors/therapists give me options. As if I know what each involves and what would be most useful.

 

[Kati]

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

Out of pure chance someone I follow on twitter shared it. Interesting for me as I am as yet undiagnosed but have just been referred to a clinic which does CBT.

My doc gave me two choices of neurologist or clinical psychologist/psychiatrist. I was pretty confused as to why she was recommending the latter. I opted for neurologist but for some reason she ignored that and went for the clinical psychologist/CBT route. Bit annoyed about this really but very unsure as to which one to go for anyway. The CBT clinic has sent me a letter saying they need some blood/urine tests done first. I am wondering what those tests will be and whether they are of any use. i.e. will they be standard tests like thyroid checks I have done already. Or will they be looking for infections which I haven't had done.

I was thinking the neurologist would be the sensible path but then I think maybe they would just confirm my leg twitching is not related to something more serious like MS or ALS and that it is (as I suspect) 'only' fasciculation syndrome (and so it wouldn't really get me anywhere).

Always find it confusing and frustrating when doctors/therapists give me options. As if I know what each involves and what would be most useful.

Hi @paulie i am not sure what part of the world you are from, but it would be best you see a ME specialist, someone who sees patients days in and days out. In general neurologists can test muscles nerves, however they are not necessarily tuned go diagnose ME.

It becomes more important if disability insurance is involved.

Best, Kati

 

[paulie]

Hi @paulie i am not sure what part of the world you are from, but it would be best you see a ME specialist, someone who sees patients days in and days out. In general neurologists can test muscles nerves, however they are not necessarily tuned go diagnose ME.

It becomes more important if disability insurance is involved.

Best, Kati

Thanks Kati,

I'm UK based. The clinic that I have been referred to specialises in CFS judging by the pamphlet I got with the letter. It's just that I suspect the treatment is based on what the article I linked to is saying is founded on bad science.

Because I have non stop twitching in my calf muscles it just made sense to me that seeing a neurologist would be a good idea.

When she mentioned cbt/psychiatrists alarm bells rang and I thought - my gp thinks it's all in my head (despite me showing her a video of my leg twitching away and explaining this is what my legs do non-stop). And now I read the article above I am very suspicious. I have already done two lots of cbt (for depression/anxiety) and I don't really want another year of doing something like that. If however I could get a concrete "yes you have cfs" out of it then maybe it would be worth it.

Ideally I would see both a neurologist and the cfs specialist but I guess funding doesn't allow me to do both.

 

[Kati]

Thanks Kati,

I'm UK based. The clinic that I have been referred to specialises in CFS judging by the pamphlet I got with the letter. It's just that I suspect the treatment is based on what the article I linked to is saying is founded on bad science.

Because I have non stop twitching in my calf muscles it just made sense to me that seeing a neurologist would be a good idea.

When she mentioned cbt/psychiatrists alarm bells rang and I thought - my gp thinks it's all in my head (despite me showing her a video of my leg twitching away and explaining this is what my legs do non-stop). And now I read the article above I am very suspicious. I have already done two lots of cbt (for depression/anxiety) and I don't really want another year of doing something like that. If however I could get a concrete "yes you have cfs" out of it then maybe it would be worth it.

Ideally I would see both a neurologist and the cfs specialist but I guess funding doesn't allow me to do both.

Your judgement is correct regarding the bad science. Your GP should be provided with information regarding PACE, but there are chances that he/she will not be ready to accept that due to brainwashing. Regarding twitching, absolutely, see a neurologist. Personally I would pick the neurologist over a UK cfs specialist.

Your best defense at the moment is knowledge. Know you are not alone, and there are good people in the UK, notably the ME charity Invest in ME (they are on Facebook) and the ME Association- Dr Julia Newton does good ME research I think she is based out of Newcastle. i am not entirely sure she sees patients.

I hope it helps.

P.S. The title of your thread is a bit confusing, and you would probably get more replies if you changed it to 'new patient from the UK: CFS specialist or neurologist?' or something like this.

 

[CFS_for_19_years]

There is no mental disorder that would account for non-stop twitching in the calf muscles, so yes, I'm in favor of you seeing a neurologist.

Since you already have been through CBT for depression/anxiety, you should already have the skills necessary to decide when you are catastrophizing, over-generalizing, making all-or-nothing statements, etc. Without knowing much about the CBT clinic, it's hard to know if the therapy will cover the same issues.

I'm curious though about what blood/urine tests the CBT clinic wants to run on you. A lot of us here are very familiar with the necessary screening tests that should be done when focusing on ME/CFS. Is there any way they can email the list to you? If they have a good battery of tests, I'd at least try to get that far. You can always bail on the CBT later.

 

[taniaaust1]

You said you have anxiety and depression, I wonder if you are on any drugs for that as some drugs can cause symptoms such as twitching.

 

[taniaaust1]

As far as wondering what you got, of cause you need all you can get ruled out first by tests but I suggest not to accept a ME/CFS diagnoses unless you fit one of the following as many get diagnosed with this in UK who shouldnt be (the criteria is very lax there and many who have other things get wrongly diagnosed)

http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf (Canadian Consensus ME/CFS criteria) .. scroll down to you reach the table, its on about page 8. (this is probably the easiest to read and understand)

the international ME criteria http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full (if you scroll down you will reach a table of the diagnostic criteria)

If you dont meet either of these, I suggest to keep looking for whatever is wrong.

 

[TiredSam]

I would consider changing my GP. Say you'd like a referal to a neurologist, and if your GP doesn't give you one, go GP shopping until you find one who will. The GP you have may end up costing you a lot of time, energy and upset having frustrating arguments that you shouldn't have to put up with.

 

[paulie]

Your judgement is correct regarding the bad science. Your GP should be provided with information regarding PACE, but there are chances that he/she will not be ready to accept that due to brainwashing. Regarding twitching, absolutely, see a neurologist. Personally I would pick the neurologist over a UK cfs specialist.

Your best defense at the moment is knowledge. Know you are not alone, and there are good people in the UK, notably the ME charity Invest in ME (they are on Facebook) and the ME Association- Dr Julia Newton does good ME research I think she is based out of Newcastle. i am not entirely sure she sees patients.

I hope it helps.

P.S. The title of your thread is a bit confusing, and you would probably get more replies if you changed it to 'new patient from the UK: CFS specialist or neurologist?' or something like this.

Thanks Kati. Have used your suggestion for the title.

 

[paulie]

There is no mental disorder that would account for non-stop twitching in the calf muscles, so yes, I'm in favor of you seeing a neurologist.

Since you already have been through CBT for depression/anxiety, you should already have the skills necessary to decide when you are catastrophizing, over-generalizing, making all-or-nothing statements, etc. Without knowing much about the CBT clinic, it's hard to know if the therapy will cover the same issues.

I'm curious though about what blood/urine tests the CBT clinic wants to run on you. A lot of us here are very familiar with the necessary screening tests that should be done when focusing on ME/CFS. Is there any way they can email the list to you? If they have a good battery of tests, I'd at least try to get that far. You can always bail on the CBT later.

I have just emailed the clinic to enquire as to what the blood/urine tests are. The information leaflet I was sent doesn't say anything.

That is a good point about previous CBT. I learned a lot and found it facinating doing CBT in particular group CBT for social anxiety. I think I agree I have enough knowledge to deal with it. I don't actually feel that depressed/anxious generally. The truth is I think any depression I have is mostly due to feeling exhausted every day for many years. If I wasn't tired things in my life could be quiet different and I could achieve a lot more in terms of resolving the depression.

EDIT: Should have said - I suspect the CBT is exactly like the CBT I did previously for depression. The leaflet talks about graded exercise. Graded exercise and graded exposure was a key aspect of the CBT I have already done. My GP actually claimed that the clinic also deals in part with neurology. I am not sure if that is true. It sounds dubious. I guess they may make an initial assessment as to whether I would need referring to a neurologist but the leaflet I have been sent explicity states that GET (Graded Exercise Therapy) and CBT are the only treatments they offer due to scientific evidence available.

 

[brenda]

@paulie

I am afraid that you are not likely to get much help from a neurologist in the UK unless you are looking for a MS diagnosis. But as has been said, do not accept a cfs diagnosis atm. The tests you will get are pretty useless as well but there is a chance you might have some other condition.

 

[eafw]

The CBT clinic has sent me a letter saying they need some blood/urine tests done first. I am wondering what those tests will be and whether they are of any use

They will be fairly standard things, to rule out anything obvious (like anaemia), and also to give them grounds to declare that you are suffering a psych condition rather than a physical one: "well nothing showed on the blood tests !"

The clinic that I have been referred to specialises in CFS judging by the pamphlet I got with the letter. It's just that I suspect the treatment is based on what the article I linked to is saying is founded on bad science.

All the CFS NHS clinics in the UK base themselves on PACE and the NICE guidlelines, it is very bad science and very bad for patients.

Because I have non stop twitching in my calf muscles it just made sense to me that seeing a neurologist would be a good idea.

There's no reason why you can't see a neuro and be referred to the CFS clinic as well. Bear in mind that many neuros are happy to peddle the "functional disorder" (ie psych) line, and leg twitches can be muscle fatigue, autonomic, and assorted other stuff too.

 

[paulie]

You said you have anxiety and depression, I wonder if you are on any drugs for that as some drugs can cause symptoms such as twitching.

Well spotted

I have been on 4 different anti-depressants over the last few years. The last one I stopped as I felt it just made my fatigue worse - as they all did really.

It is true that the anti-depressants caused twitching. This is when I first noticed the twitching because a lot of the twitching was very pronounced. Often whole limb jolts. I know this is a known side effect of ssri. I stopped taking the last anti-depressant I was on about 2 months ago but the twitching has not subsided. My fatigue goes back years though - well before I ever tried any anti-depressants.

I kind of wonder if the twitching was there all along and the SSRIs just bought my attention to it. Even though it happens continuously through the day I don't generally notice it unless I look at my calf muscles. All that twitching seems to mean my body never gets a chance to recover hence the constant fatigue. I has crossed my mind whether this is a possible cause of CFS - presumably there are EMG studies on micro-twitching in patients with CFS where the twitching is not noticable to the eye but still happening constantly where it doesn't in a health person. I'd be interesting to know that.

 

[paulie]

@paulie

I am afraid that you are not likely to get much help from a neurologist in the UK unless you are looking for a MS diagnosis. But as has been said, do not accept a cfs diagnosis atm. The tests you will get are pretty useless as well but there is a chance you might have some other condition.

It's all very frustrating. I understand the neurologist would not be of much help. But ruling things out is a big part of diagnosis. I just wish the health service in the UK were more focused on root causes rather than symptom treatment and hoping patients just get better and don't need to keep coming back. What I find odd is my GP said they have reached the end of what they can do so it's time to refer me for CBT. I have never had a single test to try and identify an infection. The level of testing for things like thyroid problems seems odd to me as well. My GP said they had done all the tests but from my point of view there are many many other tests that could be done that they don't offer. Pretty frustrasting although I understand that costs dictate that the health service can't just send patients for never ending tests.

 

[charles shepherd]

Paulie - Here is some general information from the MEA on the Clinical Assessment and Diagnosis of ME/CFS that you should find helpful:

In relation to making a diagnosis of ME/CFS:

Firstly, it's important to note that doctors do not have a blood test that can confirm the diagnosis of ME/CFS

From what you say it sounds as though you ought to ask your GP about the possibility of having a referral to a hospital-based ME/CFS clinic where any diagnostic uncertainty relating to ME/CFS could be resolved.

There is a full list of contact details for all the ME/CFS clinics in the UK on the MEA website:

http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/

If there is not a suitable service nearby the Countess of Mar has established through a House of Lords PQ that you can be referred elsewhere to an NHS service/consultant of your choice:

http://www.meassociation.org.uk/201...-their-own-choice-of-consultant-24-june-2014/

Obtaining a proper diagnosis is important because if you do actually have ME/CFS this needs to be managed in an appropriate manner. Bad management or no management is not an option

Having a firm diagnosis (if you do actually have ME/CFS or a post viral fatigue syndrome) will also help in relation to benefits, employment rights etc

Issues relating to diagnosis and nomenclature (ME, CFS, PVFS) are covered in the series of educational videos that we have done:

http://www.meassociation.org.uk/2014/05/18922/

This work was funded by a grant from the Dutch government.

We have MEA information leaflets covering:

• activity/energy management and pacing - depending on stage and severity of illness
• DWP benefits that can be claimed by people who have ME/CFS - as well as leaflets covering individual benefits (eg ESA, PIP)
• all aspects of employment and occupational health - as ME/CFS is covered by the Disability Discrimination Act and 2010 Equality Act

MEA literature order form:
http://www.meassociation.org.uk/wp-content/uploads/MEA-Order-Form-July-2016.pdf
MEA on line shop:
http://www.meassociation.org.uk/shop/


Please note that good early management of either ME/CFS or a post-viral fatigue syndrome is very important when it comes to reducing the risk of more long term or severe illness - so it is important to obtain obtain good medical advice if it seems possible that you have ME/CFS.

WHAT DOES THE MEA DO AND WHY?

http://www.meassociation.org.uk/201...ociation-do-and-why-our-august-2014-snapshot/


Regarding DWP benefits:

If you are unable to work due to ill health you should be able to claim ESA.

If you require help with care and mobility, there is a new DWP benefit called PIP (Personal independence payment).

We have MEA information leaflets explaining how these two benefits apply to people with ME/CFS and detailed guidance on how to fill in the application forms.


I have also attached a link to a copy of our new information leaflet on Early and Accurate Diagnosis of ME/CFS/PVFS:

http://www.meassociation.org.uk/201...nals-that-could-improve-prognosis-9-may-2016/


Dr Charles Shepherd
Hon Medical Adviser, MEA

And in relation to CBT, GET and Pacing you ought to have a look at our summary of patient evidence on these approaches to management:

http://www.meassociation.org.uk/how-you-can-help/introduction-to-our-cbt-get-and-pacing-report/

 

[paulie]

I would consider changing my GP. Say you'd like a referal to a neurologist, and if your GP doesn't give you one, go GP shopping until you find one who will. The GP you have may end up costing you a lot of time, energy and upset having frustrating arguments that you shouldn't have to put up with.

My experience with GPs is really not good. They are all nice enough but I have little confidence in their expertise. When I first got ill I discovered I had developed a caffeine intolerance. I saw six different GPs none of whom suggested I may have a food intolerance. I was just put on different meds and told not to eat spicy food and see what happens. It was only by chance that I decided to give up foods and the first one I tried was caffeine which solved the problem. Ever since then I always come out from seeing the GP feeling frustrated like it's all a game of postponing things.

I find it hard to know if its lack of time or lack of knowledge or lack or interest on GP's part. Or whether the problem lies with individual GPs or the system itself.

 

[Mij]

@paulie I first went to see an M.E specialist and he sent me to a neurologist to rule out MS.

 

[Stewart]

What I find odd is my GP said they have reached the end of what they can do so it's time to refer me for CBT. I have never had a single test to try and identify an infection. The level of testing for things like thyroid problems seems odd to me as well. My GP said they had done all the tests but from my point of view there are many many other tests that could be done that they don't offer. Pretty frustrasting although I understand that costs dictate that the health service can't just send patients for never ending tests.

The NICE guidance - which is horribly flawed in many ways - does at least include a list of standard tests that GPs should do before diagnosing ME/CFS:

• urinalysis for protein, blood and glucose
  
  
• full blood count
  
  
• urea and electrolytes
  
  
• liver function
  
  
• thyroid function
  
  
• erythrocyte sedimentation rate or plasma viscosity
  
  
• C-reactive protein
  
  
• random blood glucose
  
  
• serum creatinine
  
  
• screening blood tests for gluten sensitivity
  
  
• serum calcium
  
  
• creatine kinase
  
  
• assessment of serum ferritin levels (children and young people only).

www.nice.org.uk/guidance/cg53/chapter/1-Guidance (Paragraph 1.2.2.3)

You could take a copy of the relevant section of the guidance with you next time you see your GP and get her to confirm to you that she's done each one of these tests.

You could also take a copy of the statnews article, and explain that the latest independent evidence shows that CBT and GET are totally ineffective, so you're not willing to waste your time or the NHS's money on a referral to a clinic that only provides worthless treatments which have no realistic prospect of helping you get better. If your doctor feels there's any benefit to you seeing a neurologist, there's nothing stopping her from referring you to a neurologist rather than a CBT clinic that might do a bit of neurology on the side.

(I'm in a very similar situation to you - muscle spasms in my calves and constant muscle tightness across my neck and back. My GP doesn't want to refer me to a neurologist either, even though physios have told me my problems are neurological in origin. The only difference is that my GP knows by now there's absolutely no point in suggesting CBT to me...)

 

[Glycon]

In my opinion, seeing a competent neurologist is the first order of business when the diagnosis of ME/CFS is seriously considered. I say that because there are many diseases that could be confused for ME/CFS, but are actually neurological conditions, some of which are more treateable than ME/CFS is at present (and some of which can actually kill you if untreated).

 

[Mrs Sowester]

All the CFS NHS clinics in the UK base themselves on PACE and the NICE guidlelines, it is very bad science and very bad for patients.

Not in my experience.
Cornwall is surprisingly good - they can't do anything to make you any better but they don't believe it's psychological or do anything to make you any worse. I refused the chance to see them for a few years because I heard scare stories about GET. I gave in in the end because my family wanted me to get a 'definite diagnosis' and the clinic was really helpful with drugs, pacing, finding my baseline, disability aids and helping me accept what was happening to me. I'm grateful to them.
I got the impression they paid lip service to the NICE guidelines and did a little extra where they could.

That said @paulie if you get the chance to see a neurologist then take it - they can rule out other neuro conditions like MS that you may otherwise worry about.