Leeds ME/CFS clinic (UK)

[Large Donner]

Just be careful because so often these clinics make people worse and then discard them.

Yes.

Also they have pages of crap that they can add to your medical file or verbalize to other health care workers that can prevent you from receiving adequate care in the future or more tests. They can even prejudiced your own GP against you. They even make peoples friends and families doubt them.

One more thing, I just could not interact with any service if I had the slightest feeling that they didn't understand how biomedical an illness ME is. That would be because I refuse to allow them to turn my bum on a seat into financing their clinic.

Many of them have the philosophy, "anxiety etc is just as physical an illness as physical diseases, so people are experiencing physical symptoms in that sense, but we wont engage in discussion with the patients over the nature of the cause because it will prevent them from following our instructions if they suspect it."

Im really sorry but.........

Apparently the body ‘realises’ it can now stop and deal with the years of stress and trauma so it totally breaks down. It then becomes unwilling to get better, as it has a ‘memory’ of what came before – to put it simply, it thinks that if it gets better, it will be put back in the original, stressful situation. You almost need to re-train it to understand that the stressful situation/danger/threat is no longer there and it is safe to start functioning again.

.......is text book anxiety treatment. This tells me this clinic has no idea what ME is and there is no way they could make such statements about MS. The reason for that is the believe MS is a real physical illness and not physical manifestations of "emotional trauma or stress" that are "just as physical to the person experiencing them as other illnesses".

Naturally any clinic must be seen statistically to be a success or they will not get funding or patient money. If they continue to bluff people or even just convince them of their own flawed ideas and beliefs they continue the viscous circle.

The problem with bad clinics for ME is they are cheap for the government yet can make all sorts of unscientific dubious claims because what they produce is not put up to scrutiny, is believed uncritically by influential people and because it simply serves the purpose of the staff and the health service.

This in turn then has an effect on the community as a whole.

 

[potbatch]

Hi! I've had a bit of a mix and match of NHS and private testing. I was lucky enough to have literally just (1 month earlier!) moved to a new job that offered private healthcare as a benefit. I had been to my GP many times over the years with individual symptoms but finally realised I needed to look at it as a whole. I got nowhere aside from a panel of standard blood tests (which came back ok). So the first thing I did was write a list of every symptom (2 pages long!!) and make a private GP appointment. She really took her time getting a medical history and asking lots of questions and eventually said ME was likely, but everything else would have to be ruled out first. She wrote to my GP and told them which tests I'd need.

Hi Katie, Very interested to hear about your getting a private Gp in Leeds & wonder if you can give me any details about how you managed this. Would be very useful to be able to consult a GP privately especially as NHS GP is always so busy, distracted etc. Many thanks

 

[maryb]

Yes.

Also they have pages of crap that they can add to your medical file or verbalize to other health care workers that can prevent you from receiving adequate care in the future or more tests. They can even prejudiced your own GP against you. They even make peoples friends and families doubt them.

One more thing, I just could not interact with any service if I had the slightest feeling that they didn't understand how biomedical an illness ME is. That would be because I refuse to allow them to turn my bum on a seat into financing their clinic.

Many of them have the philosophy, "anxiety etc is just as physical an illness as physical diseases, so people are experiencing physical symptoms in that sense, but we wont engage in discussion with the patients over the nature of the cause because it will prevent them from following our instructions if they suspect it."

Im really sorry but.........



.......is text book anxiety treatment. This tells me this clinic has no idea what ME is and there is no way they could make such statements about MS. The reason for that is the believe MS is a real physical illness and not physical manifestations of "emotional trauma or stress" that are "just as physical to the person experiencing them as other illnesses".

Naturally any clinic must be seen statistically to be a success or they will not get funding or patient money. If they continue to bluff people or even just convince them of their own flawed ideas and beliefs they continue the viscous circle.

The problem with bad clinics for ME is they are cheap for the government yet can make all sorts of unscientific dubious claims because what they produce is not put up to scrutiny, is believed uncritically by influential people and because it simply serves the purpose of the staff and the health service.

This in turn then has an effect on the community as a whole.

I agree completely, these clinics are using money that could be better spent elsewhere doing actual research into the illness and.... even finding successful treatment options, whilst people believe they're worth this money and keep attending them they will continue to run. I don't care how many ME patients an OT sees over 20yrs, if they're still doing counselling, support, aids etc. then this doesn't require them to be working in a specialist clinic. I worked with health professionals over many years, they don't have infinite skills. They won't challenge the status quo, its a hierarchy.
Also I'm sorry but people get by in life with all sorts of illnesses, they find resources, help, information and advice themselves without specialist clinics.

 

[jimells]

Sorry if I seem defensive, I'm new to this forum and perhaps need to develop a thicker skin haha!

I would like to assure you (if I may be so bold) that no criticisms here are aimed at you in any way. Your reports of how the clinic operates are very helpful, as it exposes where they need to change their approach, and how other patients may best utilize the clinic's services.

A well-informed patient who understands the fallacies of the "Mind Magic" theory may then be in a position to follow an old Alcoholics Anonymous slogan: "Take what you can use and leave the rest". This is the approach I have to use with my current primary care provider, who insists my illness is "primarily psychological".

Since I know my illness is "not* psychological, I just say no to psychological treatments and stick to asking the doctor to renew prescriptions for treatments that actually help.

If we haven't scared you away (I hope not) you will soon find that all internet essays and published research are examined very carefully; even research from highly-respected researchers comes under the microscope. There is so much bad information out there that only careful examination can separate the wheat from the chaff. This is important because some of that chaff, i.e. GET and CBT, can seriously harm patients.

 

[CantThink]

@katiecupcake

I think part of the problem is something you've basically said yourself: this is 'it' for people with M.E..
As there are no other options, patients - especially ones who are newer to the disease or don't know much about the history of M.E. in the UK - accept what is on offer because that's all there is.... Creating a mixture of desperation and feeling obliged to try out what is offered.

What concerns me, and I'm sure many others, is that we are time and again aware of people going through NHS GET/CBT treatment and worsening or staying the same. In many cases the worsening is pretty much permanent or long term. For some, this worsening has been severe.

When you know of this, it is hard to quietly sit by & watch other people (who many not know this) undertaking this type of 'treatment'. You do not want to feel somehow party to their potential worsening/demise, and then wish you'd warned them. I tend not to say anything because it is hard to explain it without sounding negative, aggressive or bitter or whatever... It is difficult to caution people who are so hopeful that the NHS clinic services will help them, especially in the absence of any NHS alternative.

I can understand why the person might feel we are 'negative nellies' or that we don't want to accept the truth or something. At the end of the day patients should do their due diligence and figure out whether what they are being advised/prescribed/offered by medical professionals is appropriate given current research and their individual test tests etc. Many patients just go with what the doctor or other medical professional advises.

I got ill as a child, before the name CFS was even termed, and we didn't have these so-called 'treatments' or ME/CFS clinics. Yet I (and my mother) observed whst was happening and how the illness seemed to 'work'. As a result I taught myself to pace, to rest properly with no stimuli, and was encouraged by others to try to slowly increase activity/exercise (basically a form of GET) etc etc... They were just obvious things... I don't really see them as specialised and I don't see them specific to this disease over other chronic illnesses.

People suffering from many types of chronic illness would probably benefit from resting properly, from dealing with any anxiety or depression, from pacing and gradually building up fitness/activity. It is pretty much the same things I have seen people advised of when they have surgery and are in the recovery period. I see this as general illness management.

It is, ironically and sadly, actually M.E. that is totally unsuitable to using GET as a tool... We aren't just exercise intolerant or deconditioned. We have something specifically wrong - as evidenced in the 2 Day CPET exercise test:
http://www.workwellfoundation.org/testing-for-disability/. It is dangerous for us to push ourselves in this increasing activity/exercise way, yet the NHS clinics advise us to do so.

How that be considered right, I really don't know. IMO anyone who is specialised in the M.E.field would know about this evidence, and would ethically be precluded from advising patients to undertake GET or anything similar.

 

[katiecupcake]

Sorry for the slow reply guys, haven't had the spare energy to come back til now. Just a quick thing I need to make very clear: at the time of diagnosis, I had been in my new job just 1 month (after 10 years elsewhere). As they didn't really know me yet, I had a lot to prove. Within a few months it went to me constantly being absent, then having to reduce my hours, then finally having been on long term sick for 14 months. As you can imagine, this was extremely worrying for me (especially financially and just waiting to be let go at any moment). I also loved the job and was scared to have my future there go down the drain.

They have been nothing but fantastic, but obviously as they aren't getting any benefit from employing me and are still paying some sick pay, they've taken a very active role in my health process. I was assigned my own OT through them plus an assessment with a consultant, as well as the ME Clinic, GP and various other alternative 'treatments'.

In order to be seen as cooperating, I was expected to take an 'active role' in my attempt at recovery - they wanted me to try anything offered to me, with the support of their OT and consultant, who backed me attending the NHS ME Clinic. I had to provide regular updates as to what treatment I'd had, how I was feeling etc. Until around summer 2015, the idea was still that I may eventually start a return to work plan, although they've stopped talking about that now as it's clear I just can't.

What I'm trying to say is that basically had I not agreed to and tried all offered treatments, I would not have been cooperating with my back to work plan, would have been given much less leniency in length of time off whilst still being employed and sick pay (non govt) could have been withdrawn. When it comes to needing to keep a roof over my head, eat and pay the bills, there was no opportunity to take a stand and abstain from particular treatments. It's a 'backed against a wall' situation and I'm not saying it's ideal, but they're a business and that's life. I couldn't afford to take any ethical stand.

I totally understand those who are concerned about the clinic treatment having the potential to make me worse. It's something I've given a lot of thought to since posting on here, and I appreciate the concern from you guys - I know you're speaking from experience and don't want to see me go through the same.

At the moment I still have to comply due to work, but I'll be giving a lot more thought and scrutiny to the ME Clinic's suggestions and won't just take everything they say at face value. I remain open minded and willing to try most treatments, but will not push myself too hard or continue with anything that seems to negatively impact me.

Thanks for everyone's replies and input x

 

[katiecupcake]

Hi Katie, Very interested to hear about your getting a private Gp in Leeds & wonder if you can give me any details about how you managed this. Would be very useful to be able to consult a GP privately especially as NHS GP is always so busy, distracted etc. Many thanks

Hey! I actually paid for the private GP appointment. It's as simple as finding one in your area (mine was through Bupa or Nuffield, can't remember which but just Google your area). The downside is it was very expensive! But I could afford it at the time and was desperate for help. I think it cost around £125 though there may be cheaper out there.

I feel exactly the same re NHS GP's, even booking a double appointment they just don't have the attention and focus you need. I've luckily found a great NHS GP now, who I trust and who genuinely makes an effort to help, but it took a long process of elimination! Good luck xx

 

[Valentijn]

What I'm trying to say is that basically had I not agreed to and tried all offered treatments, I would not have been cooperating with my back to work plan, would have been given much less leniency in length of time off whilst still being employed and sick pay (non govt) could have been withdrawn

Is this legal? In the case of unproven (and disproven) treatments, it seems both unethical and inhumane.

 

[maryb]

No insurance company or company sick pay plan can make patients have any treatments they don't want to have. Nothing to do with them being motivated/trying to get well.

I was paid sick pay no problem, full pay for 6 months, half pay for 6 months and then statutory sick pay, my job was held open for 2 years, I realised by that time that I wouldn't be able to go back so reluctantly gave my notice. I never had any treatment, or referrals for ME, just to the usual GI, ENT etc consultants - we all seem to go through that when searching desperately for answers as to why we suddenly become sick people.

 

[Aurator]

as they aren't getting any benefit from employing me and are still paying some sick pay, they've taken a very active role in my health process. I was assigned my own OT through them plus an assessment with a consultant, as well as the ME Clinic, GP and various other alternative 'treatments'.

It's both touching and demoralizing to see how blithely optimistic the outlook typically is of employers, GP's, ME clinics, everyone in fact, towards prognosis. Typically the last thing any of them can get their heads round is the hyperchronic nature of the illness and its tendency in a significant number of people to worsen with time rather than improve. Measuring the illness by the standards of all other illnesses they know, they assume that in a year or two you will inevitably get better as a result of the time off work and the evidence-based treatments you're receiving from highly qualified specialists or else some very good explanation will be found for why you haven't recovered.

When a patient doesn't get better after all this time off work and the treatments they've had, almost inevitably the employers, GP's et al. start questioning not whether the treatments are in fact even remotely efficacious in the first place but whether this failure to recover might be part of some complex psychiatric disorder the patient is suffering from and was suffering from at the time s/he fell ill. After all this time surely you would either have got better or some concrete cause would have been found for why you are as ill as you're claiming to be.

It takes quite a bit of blind faith and even more open-mindedness for someone to accept that a patient is more likely to be suffering from an as yet poorly understood disease for which there is presently no effective treatment, and which, if no effective treatment is given, can sideline a person for life.

A former colleague of my wife was in a very similar position to you, Katie, and although her employers were at first very sympathetic and accommodating they gradually lost patience with a situation that they clearly could not understand. After giving the employee what amounted to an ultimatum which forced her to go back to work she rapidly became much iller and was then unceremoniously got rid of.

 

[eafw]

Reading everyone's views made me wonder, should I expand or add another post discussing and addressing some of the things above?

One thing you might like to think about are the ways in which the clinic measures your progress, or whether they have any quantifiable measures of progress at all ? Is following their advice actually leading to improvements in your health, if so is it a genuine improvement or a temporary "feeling" better/fluctuation/remission ? If not what are the excuses they come up with for that ? Again, how are they measuring success ?

Another aspect, linked to that, is the phenomena where desperate and mistreated people come across practitioners who seem to "understand" ... finally someone gets it ! ...and this "feels" very nice. Do not underestimate how much this influences the way people think about the OTs (or whoever), and obfuscates the lack of any meaningful treatment.

Beware of the "lovely" therapists in these clinics who, perhaps knowlingly, perhaps carelessly, exploit this ... and often get away with it in mild/moderate/ short term cases (ie those who would have made some recovery anyway with resting/pacing/self care because this is all they have to offer)

 

[jimells]

When it comes to needing to keep a roof over my head, eat and pay the bills, there was no opportunity to take a stand and abstain from particular treatments. It's a 'backed against a wall' situation and I'm not saying it's ideal, but they're a business and that's life.

No. It's not life - it is barbarism, inexcusable, and all too common for us. Taking time off from work and doing damaging exercise is little different from feeling forced to work to pay the rent - the end result to the patient is the same. Patients should not be forced to decide, "Should I starve now, or wait until I can't get out of bed anymore".

Severe cardiac patients would not be expected to exercise to collapse, but for us it is "Usual Care". It is hardly different from threatening to beat a slave who is collapsing from exhaustion. Only with us the whip is invisible and no one sees the scars, and it's "for our own good", or so we are told.

As Dr Coyne has been saying on Twitter, we are being abused and this is a civil rights issue, so we need to treat it that way.

 

[wastwater]

I just realised that Leeds cfs could be the right place for me only if I don't use it a cfs centre
See immunologist for rare primary immunodeficiency(PID)
And psychiatrist for effects of PID
I find it interesting that the infectious diseases doctor that used to head up Leeds went into AIDS medicine
Maybe when it was conceived there was good thinking behind it but it turned into CBT/GET for a wider audience

 

[potbatch]

I just realised that Leeds cfs could be the right place for me only if I don't use it a cfs centre
See immunologist for rare primary immunodeficiency(PID)
And psychiatrist for effects of PID
I find it interesting that the infectious diseases doctor that used to head up Leeds went into AIDS medicine
Maybe when it was conceived there was good thinking behind it but it turned into CBT/GET for a wider audience

The immunologist, Dr Philip Wood, is no longer at the clinic, but you can get a referral directly to him at St James's. http://www.leedsth.nhs.uk/consultants/dr-philip-wood

 

[wastwater]

I have another good professor immunologist in mind from Newcastle although she isn't connected to me/cfs might be good to have no bias,I've often wondered if she would be interested in me/cfs or of any use for it.

 

[Cap413]

Hello everyone... I'm a new member to the site and this is my first post. I'm from Leeds and I have suffered with the condition for the past 12 years but only diagnosed 2 years ago. My health has steadily declined over the past year and a half and I'm currently bed bound.
I just wanted to add my experience of the CFS/ME service in Leeds which the OP asks about. I'm not sure if this thread is still active but here we go. Let me know if I should write this elsewhere. Before I go into detail I just want to say that I'm really glad if others have had positive experiences of either the outpatient service at the Newsam Centre or the inpatient component at the LGI, but for me, I have not had positive experiences of either.

I was initially referred to the Newsam Centre a year and a half ago to see an OT. Whilst they do offer home appointments, this isn't something they advertise so unless you know they do and request one, regardless of your CFS/ME severity you will be given a face to face appointment. There is a different funding stream for those that require home appointments, a different application process and a different waiting list. A year and a half ago I was new to this world of social care and didn't understand how it worked. Being as tired and brain fogged as I was I spent 6 months on the waiting list for my appointment and then when it came asked for a home appointment and it was only then I was told this. I was given about a year approximation of wait time so I decided to go by taxi to my appointment and hope that my CFS improved. My OT was unkind and uncaring and told me (when I told her I struggled to get there) that "I did want to get better didn't I" and I wasn't going to get better by staying at home. Fair enough I thought. She also told me that there wasn't much she could tell me as I already knew a lot about diet etc. I asked what other services I could access within the CFS/ME service and she was extremely cagey and wouldn't discuss this with me. (I thought that there was CBT and wanted to discuss this with her but she kept changing the subject). The problem was as well, that the service had just had it's funding cut severely so the only staff members at that time were a few OT's. I asked for my next appointment to be a phone consultation and again, had to ask to be referred for CBT as from what she said she probably wasn't going to be able to help me.

I have had CBT with Liaison Psychiatry for a little over a year now which has been helpful to an extent.

When my symptoms increased in severity I again had to ask for a referral into the inpatient service at the YCPM at the LGI. I spent three months on this ward and it was an experience that you could not pay me to repeat again. If anyone would like to know exactly what my time was like please PM me, if that's possible, I am reluctant to go into too much detail here. They base their 'treatment' on the PACE trial. They do not listen to you, their treatment is based on how you look and their assumption, so therefore if you are constantly pushing yourself to walk around the ward, they say 'they are doing great!' 'there's nothing wrong with them' regardless of what you say to the contrary or how much time you spend in tears. They consistently apply pressure to make you increase what you do and as long as you are increasing (which you will do for fear they will discharge you if you refuse to comply) they go ahead and discharge you anyway as you have evidenced improvement. Only for you to then crash when you are discharged at home and then proceed to get worse. The mind boggles. There are a lot of good staff here and they do try but they are in the minority. It is the culture that is off. They suffer with general NHS issues such as being short staffed or having a large amount of agency staff. I do know that some people find it useful here and have improved. A friend and I always used to talk about one of the reviews on the website (they are all positive) where someone said they improved so much now they could go skiing, as we wished we would. But from our experience that wasn't the case, and nobody who left had improved. Almost everyone at the time I was there who had CFS/ME who did the full term didn't improve, a number of people discharged themselves after a week. I think they did use to be really good when they had a different team of staff and I think this is the period of time all of the positive reviews came from that they have on their website.

As someone else has mentioned on this thread the write up of my time on the ward I received gave a twisted version so now I'm unable to even use this to get the continued care I need. It's almost like I wasn't in hospital. Aftercare was to refer me back into the Newsam Centre. You get 8 sessions monthly as standard but I had to fight to get sessions biweekly to get more intensive support. I have been consistently told here that the best cure for CFS/ME is sleep and nutrition. And grading. I can tell you categorically that grading is to blame for my continued deterioration in health over the past 8 months. I don't feel listened to at all by my OT, she spends the majority of the 45 minutes talking or asking me questions and it's very difficult to get a word in about how I am feeling and even when I do she brushes over it. To ask me yet another question - what have I been doing today. I just feel like the questions she asks are for her notes, she doesn't treat me like a human being with feelings and emotions. I am just another case to her.

 

[potbatch]

Many thanks for leaving this feedback. I'm involved with the Leeds patient support group (Leeds ME Network https://leedsmenetwork.yolasite.com/ ) and it's rare that we get feedback about the local clinics these days so this is very helpful. Thank you. Your experience of the inpatient clinic doesn't surprise me. In spite of the good reviews on their own site, the feedback we've received over the years has been almost entirely terrible. If you look back over this thread, you will probably see references to the comments about the inpatient clinic left on a You Tube page. Those are well worth reading. If you can't find them, let me know and I'll dig out the link.

I'm a bit disappointed about your experience of the outpatient clinic, however, as that has been one of the better NHS clinics over the years. As far as I know, their underlying philosophy is still to use graded activity and encourage patients to find a level of activity with which they feel comfortable and then push forward only slowly according to the patient's own judgement. In other words, to manage the illness in a similar way to what patients call pacing. I too received CBT from the clinic and found it helpful. We worked on impediments to pacing such as guilt and people pleasing. It sounds like they may have taken a similar approach with you? However, your experience with the OTs is much less encouraging. I think it reveals the inexperience of some of their current staff, who most likely come from a mental health background (the clinic is run by a mental health trust) and in the absence of proper training in ME/CFS fall back on their mental health experience which is why they come up with such nonsense as "you don't want to get better, do you?" There seems to be a vacuum of experience at the Leeds clinic now and apparently in the NHS clinics in general. I am told that that the only training now available for staff in the clinics is in graded exercise therapy. If the Leeds OTs still do use graded activity they have probably picked it up for themselves from one of the clinic's own booklets, which may explain why they're not being very much help.

If grading is making you worse, I suspect they're not teaching it properly. Instead, you could try the pacing booklet from Action for ME which can be downloaded free of charge from their website. Action for ME are not well regarded by many informed patients but that booklet is ok. Alternatively there is 'Fighting Fatigue' by Sue Pemberton, a good book with a misleading title. Ironically Sue Pemberton used to run the Leeds outpatient clinic until they got rid of her to save money a few years ago. Several other experienced staff left at the same time, hence their current situation.

Any additional feedback you can give would be very useful. Thank you. Yes, you can send a direct message to me. Just click on my name on the left and a box opens up. Click 'start a conversation'. Thanks for taking the trouble to share your experience.

 

[Snowdrop]

If grading is making you worse, I suspect they're not teaching it properly. Instead, you could try the pacing booklet from Action for ME which can be downloaded free of charge from their website. Action for ME are not well regarded by many informed patients but that booklet is ok. Alternatively there is 'Fighting Fatigue' by Sue Pemberton, a good book with a misleading title. Ironically Sue Pemberton used to run the Leeds outpatient clinic until they got rid of her to save money a few years ago. Several other experienced staff left at the same time, hence their current situation.

Action for ME are not well regarded by some for good reason. AfME continue to give money and support to people who treat ME as psychologically perpetuated.

Graded exercise however it is done can be harmful to all but perhaps a few with mild ME symptomatology. There is increasingly compelling research evidence that the problem is one of inability to produce energy at the cellular level. The whole idea behind graded exercise is that the person is deconditioned and GET can help build up strength and stamina. This is not the primary problem for people with ME.

A better discussion on graded exercise can be found here: http://www.investinme.org/Article-342 CBT and GET Ineffective for ME.htm

 

[Cap413]

Action for ME are not well regarded by some for good reason. AfME continue to give money and support to people who treat ME as psychologically perpetuated.

Graded exercise however it is done can be harmful to all but perhaps a few with mild ME symptomatology. There is increasingly compelling research evidence that the problem is one of inability to produce energy at the cellular level. The whole idea behind graded exercise is that the person is deconditioned and GET can help build up strength and stamina. This is not the primary problem for people with ME.

A better discussion on graded exercise can be found here: http://www.investinme.org/Article-342 CBT and GET Ineffective for ME.htm

Yes this is exactly the case that I state with my OT whenever she starts telling me to start grading up. I agree that pacing and grading *might* be helpful if performed properly and with the proper support if the patients CFS/ME symptoms are mild and they have that extra bit of energy to start with. When you literally have nothing at all and you've been bedbound, by pushing yourself you're setting yourself up to fail and then surely on a long road of boom and bust until you gain some kind of equilibrium again. This is my first time entering the CFS/ME community so I'm not sure if there is a consensus on the causes of CFS/ME but I personally believe the issues begin at the cellular level. I've been completely bed bound for the past 6 weeks after incredible chest pain caused by my body attempting to continue the level of activity I had on the ward. My body has simply crashed and broken down completely and the Newsam Centre response? Start grading back up!

Sorry if I sound angry... I just feel so alone and helpless and nobody is helping me at all. Does anyone else feel this way?

Thank you though for the information on grading. I'll have a read energy willing.

 

[Cap413]

Many thanks for leaving this feedback. I'm involved with the Leeds patient support group (Leeds ME Network https://leedsmenetwork.yolasite.com/ ) and it's rare that we get feedback about the local clinics these days so this is very helpful. Thank you. Your experience of the inpatient clinic doesn't surprise me. In spite of the good reviews on their own site, the feedback we've received over the years has been almost entirely terrible. If you look back over this thread, you will probably see references to the comments about the inpatient clinic left on a You Tube page. Those are well worth reading. If you can't find them, let me know and I'll dig out the link.

I'm a bit disappointed about your experience of the outpatient clinic, however, as that has been one of the better NHS clinics over the years. As far as I know, their underlying philosophy is still to use graded activity and encourage patients to find a level of activity with which they feel comfortable and then push forward only slowly according to the patient's own judgement. In other words, to manage the illness in a similar way to what patients call pacing. I too received CBT from the clinic and found it helpful. We worked on impediments to pacing such as guilt and people pleasing. It sounds like they may have taken a similar approach with you? However, your experience with the OTs is much less encouraging. I think it reveals the inexperience of some of their current staff, who most likely come from a mental health background (the clinic is run by a mental health trust) and in the absence of proper training in ME/CFS fall back on their mental health experience which is why they come up with such nonsense as "you don't want to get better, do you?" There seems to be a vacuum of experience at the Leeds clinic now and apparently in the NHS clinics in general. I am told that that the only training now available for staff in the clinics is in graded exercise therapy. If the Leeds OTs still do use graded activity they have probably picked it up for themselves from one of the clinic's own booklets, which may explain why they're not being very much help.

If grading is making you worse, I suspect they're not teaching it properly. Instead, you could try the pacing booklet from Action for ME which can be downloaded free of charge from their website. Action for ME are not well regarded by many informed patients but that booklet is ok. Alternatively there is 'Fighting Fatigue' by Sue Pemberton, a good book with a misleading title. Ironically Sue Pemberton used to run the Leeds outpatient clinic until they got rid of her to save money a few years ago. Several other experienced staff left at the same time, hence their current situation.

Any additional feedback you can give would be very useful. Thank you. Yes, you can send a direct message to me. Just click on my name on the left and a box opens up. Click 'start a conversation'. Thanks for taking the trouble to share your experience.

Thanks for this reply. I will PM you to talk more about this and perhaps you could put me in touch with others who have had similar experiences?

As you say CBT was helpful in helping me understand some of my own personal barriers to dealing with this illness and helped me recognise that I do have a real solid inability to accept my limitations. I recognised this myself which was why I requested it. Such a drastic change in lifestyle (prior to this even though I had CFS/ME I managed to work full time, practice yoga and socialise with friends to go to not working, losing contact with nearly all of my friends and unable to leave the house) was difficult to manage, mentally and emotionally. But you are not offered CBT, you have to request it. A friend of mine on the ward had a number of mental health issues compounding her CFS/ME and having been there weeks she hadn't been referred on for CBT. I kept asking her to ask them but she was so tired and didn't want to cause any issues. Finally she asked and they referred her about 6 weeks in.

I am seeing someone senior now at the Newsam Centre so you would think it shouldn't be a case of inexperience. I agree that it's treated as a mental health issue, but then they don't link in with Liaison Psychiatry which they should if that's their direction so they can work in tandem. A lot of my sessions are, especially lately, filled with conflicting advice as they don't work together and have no idea what the other is saying.

Above all else, I really wholeheartedly want to get better and I will do anything to do that. The feeling that I get from both the Newsam Centre and YCPM is that if they can evidence throughout your contact with them that you improved functioning, that's all they really care about. It's all about statistics.