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UK thoughts please

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
What about South West @charles shepherd? Anyone with good reviews private/NHS?

The really dispiriting thing is the NHS seemed to go backwards with the start of the "specialist" centres. I was diagnosed by an immunologist (who also specialised in HIV/AIDS) before the centres. He did additional tests and prescribed meds for dizziness and also amitriptyline to correct reverse body clock. Although none are cures, there are many meds which can help our symptoms (a whole book Reviving the Broken Marionette).

The first time I went to the Centre as a patient I had a long appointment with a 'doctor'. I didn't realise until there was follow up correspondence that she is an OT. I'd been telling her symptoms expecting medical treatment. She is a lovely person but I don't think an OT can treat a complex medical condition like ME. It didn't do me any harm but I was steadily improving anyway and that continued. Later I saw her when I was panicking about changing job to a more demanding role. At this point I actually thought myself that this was a psychological hangover and this was when I asked for CBT. She could see that wasn't right for me but didn't dissuade me from the job (to be fair this must be nigh on impossible to judge for someone else). A few months into the job I had a massive relapse worse than ever before, from a minor tonsillitis.

When I spoke to the centre after my relapse I was saying I thought it wasn't just ME and wanted to see a doctor. Their system doesn't allow for this: you are randomly allocated a physiotherapist, an OT or the specialist GP. The person I spoke to also then commented that anyway they don't do any tests or prescribe anything. At this point I decided my GP was right and there was no point going back. After a couple of years I bought a heart rate monitor and realised POTS was also in the mix. Looking back my relapse seems more predominantly POTS but I was treating it as ME and in my 'healthy eating ' diet had cut out salt. My GP didn't know about POTS.
 

charles shepherd

Senior Member
Messages
2,239
What about South West @charles shepherd? Anyone with good reviews private/NHS?

The really dispiriting thing is the NHS seemed to go backwards with the start of the "specialist" centres. I was diagnosed by an immunologist (who also specialised in HIV/AIDS) before the centres. He did additional tests and prescribed meds for dizziness and also amitriptyline to correct reverse body clock. Although none are cures, there are many meds which can help our symptoms (a whole book Reviving the Broken Marionette).

The first time I went to the Centre as a patient I had a long appointment with a 'doctor'. I didn't realise until there was follow up correspondence that she is an OT. I'd been telling her symptoms expecting medical treatment. She is a lovely person but I don't think an OT can treat a complex medical condition like ME. It didn't do me any harm but I was steadily improving anyway and that continued. Later I saw her when I was panicking about changing job to a more demanding role. At this point I actually thought myself that this was a psychological hangover and this was when I asked for CBT. She could see that wasn't right for me but didn't dissuade me from the job (to be fair this must be nigh on impossible to judge for someone else). A few months into the job I had a massive relapse worse than ever before, from a minor tonsillitis.

When I spoke to the centre after my relapse I was saying I thought it wasn't just ME and wanted to see a doctor. Their system doesn't allow for this: you are randomly allocated a physiotherapist, an OT or the specialist GP. The person I spoke to also then commented that anyway they don't do any tests or prescribe anything. At this point I decided my GP was right and there was no point going back. After a couple of years I bought a heart rate monitor and realised POTS was also in the mix. Looking back my relapse seems more predominantly POTS but I was treating it as ME and in my 'healthy eating ' diet had cut out salt. My GP didn't know about POTS.

I'm guessing that you were treated by Prof Tony Pinching - either at Bart's Hospital in London or down in Cornwall/Devon after he became Dean at the new Medical School in the South West

Tony was a very caring physician who would go to great lengths to help his patients with both HIV/AIDS and ME/CFS.

Even so, when I was with him at the time he was subjected to some very unfair attacks for his work on the 2002 Chief Medical Officer's Working Group Report on ME/CFS

Unfortunately, Tony has now retired and while we receive similar feedback to what you have reported (which illustrates what happens when these services are not being actively led by a consultant physician) I'm not aware of a physician in Devon or Cornwall that our members find to be consistently helpful or very helpful
 
Messages
2,158
I had a few home visits from an OT about 5 years ago who ran/runs the 'service' based at Wareham Hospital in Dorset. The first time she came, a GP came with her who was supposedly taking a 'special interest' in ME. He was completely clueless. That was the extent of the specialist medical input.

The OT was very nice and supportive, but could only offer general advice about pacing and relaxation. She didn't suggest activity or heart rate monitors, just activity diaries, which I found unhelpful. Again, she knew less than I did. When she started taking an enthusiastic interest in the Lightning Process I gave up on her. I don't know what the current situation is in the Wareham Clinic.

I gave my GP, also nice but clueless about ME, a copy of the MEA Purple book last time I saw her a few months ago and talked to her a bit about the latest research. Haven't seen her since, so I don't know how she's responded to it, if at all. She said she would look at it and put it in their practice library.

Does anyone know of anything better in Dorset, or what the Wareham clinic are up to these days? I haven't dared get in touch with them since, in case they have gone over to the dark side!
 
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gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
UK people , your advice please. Is it worth pursuing help within NHS? After loads of research both on this site and locally, I see there are m.e. clinics where it seems they mostly offer the CBT, pacing and graded exercise programmes. I don't see any positive posts about this. Is there anything offered that helps? Does physiotherapy help the sore muscles? Thank you ..

In my opinion. Complete waste of time. Frustrating. They have little understanding on the mechanism of cfs.
 

Demepivo

Dolores Abernathy
Messages
411
It is interesting that different people can look at the same facts & reach totally different conclusions. Dystopia vs versus something less nightmarish.

People like Amolak Bansal or Julia Newton can offer treatments which can reduce pain or help with the problems standing up (Orthostatic Intolerance). Granted they won't cure the underlying ME problem but to disregard them totally is mistaken.

To say there is no help out there is over stating & simplyfying matters, there isn't enough of the assistance that Charles Shepherd mentions.

People who say everything is rubbish aren't helping anybody.
 

charles shepherd

Senior Member
Messages
2,239
I had a few home visits from an OT about 8 years ago who ran/runs the 'service' based at Wareham Hospital in Dorset. The first time she came, a GP came with her who was supposedly taking a 'special interest' in ME. He was completely clueless. That was the extent of the specialist medical input.

The OT was very nice and supportive, but could only offer general advice about pacing and relaxation. She didn't suggest activity or heart rate monitors, just activity diaries, which I found unhelpful. Again, she knew less than I did. When she started taking an enthusiastic interest in the Lightning Process I gave up on her. I don't know what the current situation is in the Wareham Clinic.

I gave my GP, also nice but clueless about ME, a copy of the MEA Purple book last time I saw her a few months ago and talked to her a bit about the latest research. Haven't seen her since, so I don't know how she's responded to it, if at all. She said she would look at it and put it in their practice library.

Does anyone know of anything better in Dorset, or what the Wareham clinic are up to these days? I haven't dared get in touch with them since, in case they have gone over to the dark side!

I helped to set up the Dorset/Wareham Clinic many years ago and MEA Patron, the Duke of Kent, came down to open the building

It was regarded by the Dorset patient community as being a successful attempt to provide a multidisciplinary service for people with ME/CFS and this eventually led to the Dorset NHS Primary Care Trust taking over funding in 2001

But I have no involvement with it now

The small amount of feedback that we receive from Dorset is now rather mixed - some people obviously find the service helpful but others do not. So I have not added it to my positive recommendation list.

From MEA website services directory:

DORSET: Wareham Clinic
Tel: 01929 557560

This service is provided through an outpatient clinic at Wareham Community Hospital, Streche Road, Wareham, Dorset BH20 4QQ. The service – which has been supported throughout by the Dorset ME Group – celebrated its tenth anniversary in 2009. The clinical lead is Dr Selwyn Richards, a consultant rheumatologist.
 

sb4

Senior Member
Messages
1,654
Location
United Kingdom
Can you see a cardiologist and get a Tilt Table Test perhaps. ?
This is what I did however no promises. I got a rise of 35bpm within 10ms and over 120bpm, either should be enough for a pots dx however all they said was I was in a grey zone and mentioned , you guessed it, anxiety. I was given Ivabradine however I go back in a few weeks and hopefully I will get something else.
 

charles shepherd

Senior Member
Messages
2,239
Re PoTS:

Info below is extracted from the new MEA info leaflet on PoTs and ME/CFS:
http://www.meassociation.org.uk/shop/management-leaflets/orthostatic-intolerance/


What are the diagnostic symptoms and signs?


Characteristic symptoms, which occur on standing and are normally relieved by lying down, include:


· fatigue or weakness (91%)

· palpitations or awareness of the heart beating (86%)

· dizziness (90%)

· feeling light-headed, pre-syncope/feeling faint (90%)

· sometimes actually fainting/syncope (58%), or having a transient loss of consciousness


Percentages are taken from a PoTS UK patient survey.





Other common symptoms, which occur in up to 40% of cases, include:



· nausea and other irritable bowel type symptoms

· headaches – which may be caused by lack of blood flow to the brain,

· sleep disturbance

· shortness of breath and chest pain

· visual disturbances – including blurring

· ‘brain fog’/cognitive dysfunction – as occurs in ME/CFS

· ‘coat hanger pain’ - which is thought to be due to poor blood supply to muscles around the neck and shoulder


Acrocyanosis – a puffy bluish discolouration of the hands and feet that is caused by blood pooling in the veins occurs in around 50% of cases.


Symptoms are often described as being more prominent on rising after waking up. They are frequently exacerbated by standing up too quickly, heat, some types of food or large meals, alcohol and stress. They are often exacerbated during infections and may be worse during menstruation.


For some people, the disability caused by PoTS is considerable, especially when this is added to the health problems caused by ME/CFS. Patient evidence collected by PoTS UK indicates that 23% are wheelchair users and 37% are unable to work. Although severely incapacitated, PoTS patients often look well.


Add picture of acrocyanosis:

http://mddk.com/wp-content/uploads/2015/11/acrocyanosis-pictures-2.jpg


How is PoTS diagnosed?


A diagnosis of PoTS is based on the characteristic symptoms and what is called a 10 minute active stand test and/or a tilt table test.


The Active Stand Test: Under careful supervision, heart rate and blood pressure are measured after resting/lying down for ten minutes, then immediately upon standing still (unsupported with hands by sides) and after 2, 5 and 10 minutes. This test may bring on symptoms of PoTS and some people may faint. If the result is uncertain the test can be repeated on another occasion.

Head-Up Tilt Table Test: This involves lying on a table that can be tilted to an angle of 60 to 70 degrees in a quiet, dimly lit, temperature controlled room. Blood pressure and heart rate are recorded in a continuous manner. After a period of 5 to 20 minutes of lying flat, the table is tilted. Although a diagnosis of PoTS should be made by an increase in heart rate of 30 beats per minute within the first 10 minutes, this upright position can last between 10 and 45 minutes. The patient will be asked how they are feeling during the test, so symptoms can be matched with heart rate and blood pressure. The test will end if your blood pressure becomes too low, satisfactory results have been obtained, or the maximum time has elapsed.

If facilities are available, some patients are tilted after a carbohydrate drink (liquid meal challenge), exercise or heat.


Serum catecoholamines should be checked in supine and upright positions, especially if a hyperadrenergic form of PoTS is suspected.


A heart rhythm test/electrocardiogram test should also be arranged to exclude heart problems that can cause a tachycardia as well (eg inappropriate sinus tachycardia) and thyroid function tests. Other cardiac/heart tests – eg 24 hour heart rate and blood pressure monitoring, echocardiogram, autonomic function screening tests - may be required in more complicated cases.


Unfortunately, many doctors still know little or almost nothing about how to diagnose PoTS and how to manage it. As a result, many people with PoTS are left undiagnosed, may even be misdiagnosed as having anxiety, panic attacks or hypochondriasis, or be labeled as ‘heart-sink’ patients.
 

Chrisb

Senior Member
Messages
1,051
@charles shepherd

Thanks for the above post Charles.

Could you please specifically confirm that for the active stand test the hands should be by the side. I took the results of such a self administered test to my GP once. He took a look at them and asked how I held my arms. When I told him "by my side", his attitude was well, there you are then, they should be held at shoulder height. I don't think he had a clue, to be honest.
 

charles shepherd

Senior Member
Messages
2,239
this is my worry; if I were to go to my GP (who incidentally I don't know/have never met) and ask to be tested, will they just look at me like I'm a nutter?

You could take a copy of the new MEA info leaflet on PoTS to show to your GP

As it says in the introduction, the information is based on a half day workshop on PoTs and ME/CFS that formed part of the 2016 CMRC conference in Newcastle. The workshop was organised by Prof Julia Newton (who is a leading UK expert on autonomic dysfunction and PoTS) and representatives from PoTS UK
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
We are probably going to use the next MEA website poll to look at the overall level of satisfaction with NHS hospital based services from people who have made use of them in the past 12 months

I hope you're starting to feel a bit better!

Because the quality of NHS centres is probably going to vary enormously (depending on their attitudes to CBT/GET), would it be more helpful to do a poll in which people can answer specifically about individual centres? That way, individual PWME could use the results as a bit of a guide as to which centres might be worth going to.
 

charles shepherd

Senior Member
Messages
2,239
@charles shepherd

Thanks for the above post Charles.

Could you please specifically confirm that for the active stand test the hands should be by the side. I took the results of such a self administered test to my GP once. He took a look at them and asked how I held my arms. When I told him "by my side", his attitude was well, there you are then, they should be held at shoulder height. I don't think he had a clue, to be honest.

I suggest you show your GP the slide (Initial Visit) on how to do the active stand test from this PP presentation!

http://www.heartrhythmcongress.com/...ations/141006-Arrhythmia Nurses, M Ferrar.pdf
 
Messages
2,158
There's an interesting section in one of Dr Lucinda Bateman's YouTube talks on orthostatic intolerance and using the standing test. The version she describes is called the NASA lean test.


Watch from 34.50 minutes to 50 minutes where she shows and talks about the test results for several patients. Might be useful to ask your GP to watch this section. If you dare!
 

Deepwater

Senior Member
Messages
208
I've added a few more names to this list (as below)

Please note that these are health professionals where the vast majority of reports that I/we receive at the MEA are from people who have found their input to be helpful or very helpful

I have never met Dr Patel from Nuneaton but people really seem to appreciate this service

As I said in my earlier response, one of the best ways to assess whether people find a doctor, OT, physio or clinic etc helpful is to use social media (or a local group) to find out what people who have used the particular service think of it, or the staff involved

Here are a few immediate examples of health professionals where quite extensive feedback to the MEA is normally positive or sometimes very positive:

Dr Amolak Bansal (Surrey);
Dr Saul Berkovitz (London),
Dr Abhijit Chaudhuri (Essex and Glasgow);
Dr Gabrielle Murphy (Royal Free Hospital, London);
Professor Julia Newton (Newcastle),
Dr Vinod Patel (Nuneaton),
Dr Sue Pemberton/Yorkshire Clinic (Private but takes NHS referrals),
Dr Gavin Spickett (Newcastle)

We are probably going to use the next MEA website poll to look at the overall level of satisfaction with NHS hospital based services from people who have made use of them in the past 12 months

Link to MEA website directory of ME/CFS services if anyone wants more details on any of these services:
http://www.meassociation.org.uk/spe...k-this-page-last-updated-on-20-november-2016/

Yorkshire Fatigie Clinic:
http://www.yorkshirefatigueclinic.co.uk

Nothing at all in the western half of England, then?
 
Messages
2,158
I helped to set up the Dorset/Wareham Clinic many years ago and MEA Patron, the Duke of Kent, came down to open the building

It was regarded by the Dorset patient community as being a successful attempt to provide a multidisciplinary service for people with ME/CFS and this eventually led to the Dorset NHS Primary Care Trust taking over funding in 2001

But I have no involvement with it now

The small amount of feedback that we receive from Dorset is now rather mixed - some people obviously find the service helpful but others do not. So I have not added it to my positive recommendation list.

From MEA website services directory:

DORSET: Wareham Clinic
Tel: 01929 557560

This service is provided through an outpatient clinic at Wareham Community Hospital, Streche Road, Wareham, Dorset BH20 4QQ. The service – which has been supported throughout by the Dorset ME Group – celebrated its tenth anniversary in 2009. The clinical lead is Dr Selwyn Richards, a consultant rheumatologist.

Thank you for this @charles shepherd. I thought the name Dr Selwyn Richards rang alarm bells. I've just done a forum search in here, and found this thread:
http://forums.phoenixrising.me/index.php?threads/what-did-i-just-read-nlp.46163/#post-750976

Dr Selwyn Richards has indeed gone over to the dark side. For example, this nonsense:

'Voicing body and embodying voice - a performance

...The main facilitator, Sarah Frossell, uses Neuro-Linguistic Programming (NLP) and coaches each person within the group by truly attending to the voice of their body in terms of the illness and of their return to wellbeing....

Which appears to have been built on this:

'Dr Selwyn Richards (& Ms Clare McDermott)
This feasibility study will pilot an innovative, multi-disciplinary approach which has been developed through 2 years of collaborative work in Dorset between specialist health professionals, patients with experience of recovery, researchers and patient support groups drawing on the concept of ‘Modelling Success’, taken from Neuro-Linguistic Programming (NLP)'

Oh dear. Looks like they have gone from bad to worse.

Looks like George Lewith at Southampton University is also involved.
See this thread:
http://forums.phoenixrising.me/inde...ith-severe-cfs-me-uk.32205/page-2#post-501823

Makes me thank my lucky stars that I escaped from the Wareham clinic before Michelle Selby, who was the OT I was seeing from there, was captured by this nonsense. Maybe the Lightning Process she was starting to be drawn into then scrambled her brain.

I shall steer well clear of them from now on.

I hope the MEA can look into this and add a warning to their information. It's scary that they seem to be particularly targeting the severely affected, which would include my daughter and me, if by that they mean housebound and mostly bedbound. I just hope they don't persuade my local GP's to try to force us into this. That will be the obvious next step, if @Countrygirl 's experience is typical.
 
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Messages
2,158
@charles shepherd, I agree it is good to take soundings from people who have used a service, and to ask whether they found it helpful. In theory the idea of an MEA survey sounds good.

However, if you only ask for opinions, you may get an unfairly rosy picture, for several reasons:

1. many patients simply accept what they are told and try to follow the recommendations without any awareness of wider research findings. I say this because I remember discussing the PACE trial with the Wareham clinic OT when the 2011 paper came out. She said I was the first patient she had ever come across who had read any research, let alone made a scientific judgement about it, and she'd been running that service for at least a decade.

2. If you ask patients who have recently (say within the last year) used a service they may still be in the phase of trying to 'think themselves better' - as we saw with the PACE and FINE trials where the CBT and GET groups had a temporary uptick in subjective findings that had worn off by followup.

3. Patients want to believe that the nice people who actually listened to them were really helping. It is natural to be grateful for being given any kind of treatment.


I think a more useful set of information for patients in helping them decide which clinics to use would be a clear description of the methods they use and information based on science about whether there is any evidence that these methods work.

For example, I'd like to use a clinic that tests for POTS/orthostatic intolerance and gives good advice on treatment. I'd like a clinic which advises on pacing based on the use of heart rate monitors and actometers alongside symptom diaries for those who need this. Most of all I'd like a clinic that takes seriously and investigates physical symptoms properly, and is run by a doctor, not an OT, a nurse or a psychologist.

You can guess what I don't want.

Both kinds of clinic might get good reviews.