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Leeds ME/CFS clinic (UK)

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12
AURATOR: All I can say is that in the grand scheme, the staff there have specialised training. More than, for example, any other medical professional I've had access to (GP, Rheumatologist, Neurologist to name a few). Perhaps it doesn't match up to your/other people's views of how to deal with the illness, but the fact is that some of them have worked there for over 20 years and have daily interactions with ME sufferers. This has equipped them with a detailed understanding of day to day struggles - they have shown true insight in our conversations. They don't persecute me for anything (eg research says sleeping during the day is bad. They might agree with this, but they also totally understand it can be unavoidable).

They haven't ever, in my experience with them, had unrealistic ideas or expectations about my daily living. When I say they show an understanding, I mean that they have seen my illness/situation so, so many times over the years that they do 'get it'. People may disagree (and certainly seem to) but I'm there having the meetings with them, and I can assure they do understand me. I can't and don't speak for everyone of course.

I don't know what evidence there is for the stress/trauma/re-training advice I have been given. Honestly, I am willing to give their methods a go. If they don't work, so be it, but they're all I currently have access to and I will give it my best shot (without making myself worse, don't worry!) Sadly a lot about our condition is mere speculation... there is so much more research to be done, evidence to be found, funding to be raised. Sadly, I (and we) are living right now, so I can't lie in bed slowly dying, waiting for this to be ready. This doesn't mean I won't join the fight for better and more treatment/understanding (when I have the energy haha!) but I can't do nothing in the meantime. I am already a 30 year old who hasn't worked for over a year, has lost all my hobbies, is never able to spend time with friends and family, has gained stones of weight... I have to have hope otherwise I will just be too miserable to continue fighting x
 

Quilp

Senior Member
Messages
252
Wow, a lot of responses and information to process here! I'll try my best to reply to each of you.

I get the feeling people think I'm buying in to the idea that ME is psychological. I have both ME and fibromyalgia and believe in no uncertain terms that they are real, physical illnesses. I am just trying to take full advantage of whatever help *is* currently available as my only other option is to refuse help and get accused of not wanting to get better. Yes, to put it basically this position sucks and we keep having to 'prove' we're ill, which is wrong! But whilst we fight for better scientific testing and advances, I can only use what resources are currently offered my way.

Hi Katie, I certainly didn't mean to come across that way. I am desperately unhappy because I can't help wondering what all that money could have achieved were it to have gone on finding the underlying biological causes of this illness.
 
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12
VALENTIJN:

"One of the reasons the clinic talk to me a lot about goals is that they know I'm a very goal motivated person and like to be trying to work towards something otherwise I feel a bit hopeless.


Yes, my clinic did the same. They asked me what I wanted to be able to do, and I happily and optimistically told them. It's their way of manipulating patients into increasing activity levels. It doesn't work, but at least they can blame the patient for either setting the wrong goals or somehow failing to pursue them appropriately."

- I understand your POV but I truly don't feel like they've made it their career and life's work to manipulate patients and then blame them... I can only speak for the 6 or so staff members I have personally met/dealt with, but they seem to be genuinely decent people who want to help. Perhaps their methods need some improvement in many people's minds, but I will take that over nobody offering help any day.

I don't have any expectations as such right now. I have hopes, but I know from experience that ME is unpredictable so I have no definite idea that I'll partially or fully recover. All I can do is try. My first step towards increasing my activity levels is to get some true rest. After looking in detail at my activities, they believe I don't get any true rest aside from sleeping. What I count as rest is reading and watching TV, but they believe that this is mentally stimulating. I don't know if I agree yet, but I am going to try 5 minutes of guided relaxation (my choice of method) each day and see how my body responds. Obviously if it helps, I'll build it up. If it hinders, I'll stop. If it does nothing, I'll just see whether I enjoy it or not!

Re optimising my living space - this has already been done to some level. I have a kettle in my bedroom I can use to make porridge and noodle pots etc when I can't get down to the kitchen. I now have a walk in shower so I don't have to climb over the bath edge. I use a chair in the kitchen. I have not asked for a wheelchair as I don't feel I need it - I'm usually all or nothing, totally stuck in bed too tired to wash and dress, or able to stand by myself (even if not for a long time). The help is available should I want it.

I've come to terms with the fact that I may never recover (or fully) and am not holding false ideas, just a positivity and hope that I need to keep me going. Nobody has ever made me any promises that I will definitely recover, so I'm not being misled. I hope this answers your questions well enough x
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I learnt all about pacing here:

http://www.cfidsselfhelp.org/library/topic/Energy Envelope and Pacing

Self-study may not be for everyone, but if you want some human contact and fellow patients to do it with you can join one of their courses or groups. Learning from people who have actually all have CFS has its advantages.

Like I said, I'm pleasantly surprised that you're getting good advice about pacing at Leeds. The psych stuff is unhelpful nonsense though, and the worry is that it could take up a lot of your time and energy that could be better spent otherwise. Plus it's a very small step from speculative psychological explanations to patient blaming for not being "open" or "accepting" or "trying hard enough".
 
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12
ukxmrv:

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.

Back on the NHS they did much fuller blood panels, a few xrays on various parts that hurt most (my hands and wrists primarily), trigger point testing and looking carefully at the potential side effects of any meds I was already on. They then agreed it probably was ME. Then a few months into all that I ended up having to go to A&E as my arm stopped working (literally, I couldn't move it). In the hospital, they did an MRI, a CAT scan, an ECG, some other test a bit like the ECG but I forget the name, more bloods and all the checks they do for strokes (just to rule it out). They said "oh it must be the ME" but gave me absolutely no insight or scientific reason why that'd stop my arm working! Really annoying but they just wanted me out and the bed free. Grr!

Back to private, I had a head and neck MRI to look for lesions, in order to rule out MS. Not that it can completely as apparently if lesions aren't very old they sometimes don't show up at first, but after more and more tests they don't think I have ME.

So for you - I know bloods are easy to get on the NHS, but you have to push for the more expensive stuff like CAT and MRI scans. If you are assertive enough and have the right symptoms, you should be able to get them to do their job eventually... it's a pain but we are our only advocates!! If you want to know anything else just let me know x
 
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12
THEMJAY: Ugh, it makes me so angry to hear your experience with the group believing you had a psychiatric issue. They seem to get confused - a lot of chronically ill people are depressed.... because of their situation, who the hell wouldn't be?!!! They seem to the think the illness is caused by the bloody depression! Ridiculous. I'd like them to spend a week being unable to shower, prepare basic meals, see their loved ones, slowly lose their jobs and then tell me it doesn't depress the hell out of them lol! I find CBT ok to an extent in dealing with the difficulty of being ill but not actually improving symptoms or anything.

I completely agree, not many of us are in a position to advocate for ourselves and challenge unfair decisions and behaviour. Part of the reason I started my blog was that I wanted people to understand the reality of living with chronic illnesses every day and not just what they see in newspapers (ie Martine McCutcheon magically recovering once she started juicing, don't get me started haha!) I am extremely lucky to have a mum and husband who help advocate for me when I'm not able to myself but I know not everyone is so fortunate, which breaks my heart. x
 
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12
QUILP: Hi! Yes, I was working 35 hours when I first became ill (years of bad health but I mean when it first began really, really impacting on my daily life). I dropped down to 28 hours and continued to get worse. I had a full on crash on 23 December 2014 and have not worked at all since then. I remained at a similar level for 3/4 of 2015 and have had some improvements since then. I am still totally unable to work and mostly housebound, don't get me wrong, but I am able to shower myself, prepare basic food about half the time etc, which I couldn't before. It's a slow improvement but a definite pattern.

I don't believe my treatment was to blame for the decline, rather my determination to keep working when I definitely wasn't well enough. I was scared to lose my income and therefore my home. I overdid it for too long and eventually got worse. For most of that time period, my 'treatment' at the clinic was only really reguar appointments with the OT, talking, working out adaptations to daily life and pacing. My treatment has changed a little bit in 2016, as I've been swapped to home visits - this means I'm seeing two different people who appear to have slightly different approaches. I totally admit that I didn't heed advice and take it easy as I should have - I'm a bit of a 'do-er' and still wanted to run the household, go to work, have a social life... I used to be utterly crap at accepting help!

I totally agree with you - for the CFS clinic to come under the mental health board is stupid. Definitely no argument from me here! But I either agree to disagree with the matter and still accept their help, or I don't accept any at all. I trust myself and my decisions, and if they ask me to do anything that I don't agree with or feel is making me worse, I'll definitely say so. I know that's not the case for everyone, but I feel safe in my autonomy at the moment.

I would love to see more information and testing about anti-virals - it's never really been mentioned to me. x

ETA: Don't worry I wasn't offended or anything, just wanted to make sure people had answers to what they were asking :) I'm with you, if only there was more funding. It just never seems to be one of the 'popular' priority charities sadly x
 
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12
TIRED SAM: Thank you for the pacing link, I'll check it out! I think self-study would be good for me. I'm not consistently well enough to attend a group (it was offered to me for fibro and I could never make it lol). Yeah I understand what you mean that a lot of energy could be spent working on the psych angle. We have so little energy spare as it is, we want to be 'barking up the right tree' so to speak, I guess! x
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
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...

Well, I've heard of men who think with their, umm, "private parts", but this is over the top. If "my body" somehow "thinks" it can do a better job of running the show, "my brain" is more than ready to retire, lol. :confused:
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
I have IBS and if I get nervous, I can get diarrhoea - that's an example of a purely mental feeling causing a physical reaction.

Yes, exactly, an excessive physical reaction to a stimulus that for most people might result at most in "butterflies in the stomach". Instead of asking, "What is triggering the release of excess messenger chemicals that result in diarrhea" (for example), the psychobabblers are saying, "You were thinking the wrong thoughts" with zero evidence to support their vague and incomplete theory about how thinking the wrong thoughts can cause a near-collapse after minimal exertion. It doesn't pass the smell test.

How about, "We don't know what caused your illness and we don't have good treatments." Patients deserve honesty, not a fairy tale that tends to blame the patient. It's good to hear that you feel supported by the clinic therapists, everybody deserves that, but I don't think patronizing the patients is helpful in the long run.

If I have to call the doctor's office, that will cause an increase in my epinephrine/norepinephrine levels with a whole bunch of symptoms that subside after the call is done and i take some atenolol, so I might conclude that the doctor's office is causing my illness. But when I am not calling the doctor's office, I am still extremely ill, so maybe it's not their fault after all...
 

Large Donner

Senior Member
Messages
866
Just to expand a bit more Valentijn/LC2015, I totally believe ME is a real, physical illness. However, the reason the stress/trauma explanation made sense to me (not as a sole cause, but as a precipitating factor) is that I feel the link between body and mind is real and powerful. Not that it's 'in your mind', but that things like stress can cause very real, physical symptoms (eg heart attack etc). I have IBS and if I get nervous, I can get diarrhoea - that's an example of a purely mental feeling causing a physical reaction. I do think to an extent that emotions/trauma etc can stimulate chemical reactions (think adrenaline and cortisol). I just didn't want you to think I believe ME is all in the mind lol. Hope that makes sense!

Hi Katie

I think you are at cross purposes with cause and effect to be honest. Not only that you are not evaluating how perfectly normal experiences like experiencing stress do not result in diarrhea by the billions of people who experience it every day. Adrenaline and cortisol are experienced by healthy people also. My opinion is that the "body and mind connection" philosophy is not qualified by your statement above either, in the sense that it allows implication of a weakness of mind or the need to "manage the mind differently" too readily by self claimed experts who espouse way beyond their own understanding.


Go ahead and challenge the same people on their own statements and watch how they backtrack instantly.

People often use the heart symptoms analogy also in the sense "well stress etc can lead to heart attacks". Well the problem with that is you can frighten the life out of a healthy person with non cardiac illness and they will not have a heart attack. Its also the case in billions of people everyday and people who live as refugees in war torn areas or in daily unbearable poverty are not dropping dead from heart attacks.

It would be kind of like saying to someone with congestive heart disease to just relax and and think differently about how to react when someone jumps out of a bush with a knife on them. If they did drop dead form a heart attack it would be nothing do do with their "mind".

Its not about "mind body connections", especially when there is no evidence for the level of pronouncements that comes from so called experts at such clinics.

PWME dont want to "manage their illness" they want scientific development of the cause so that standing up doesn't cause POTS symptoms that have nothing to do with the way they think about standing up.

I'm not one for "x or y or z made sense to me so I like the theory", its not about favourite theories, its about how well such theories crumble with minimal readily available observation or what should be obvious critique.
 
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12
I've tried my best to explain my experiences and how I feel about them but it seems I'm coming across as contradictory (and even a bit naive by the sounds of it, although I'm probably being overly sensitive as I tend to)! I write about my experiences in the only way I can, from my perspective and in response to the only treatment I am being offered.

I'm a patient not an expert. Three years ago I barely knew what ME was! I'm certainly not holding myself up as having all (or any!) of the answers, blogging just gives me some purpose, motivation and keeps the blues away. I'm sorry if what I've written comes across as lacking 'obvious critique'... My brain doesn't function as well as it used to and I'm still very much learning about this whole thing. I appreciate all the information and debate from you guys as it's a learning opportunity. Please be gentle in your responses if possible, as we're all on the same side here and all I'm doing is opting in to the only help available to me. If there was anything more advanced and scientific I'd grab the chance with both hands but I'm guessing that's still a way off, sadly.

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

Aurator

Senior Member
Messages
625
Thanks for your reply, Katie. You've worked very hard answering everyone's questions.

I'm sure the people at Leeds do have some understanding of what it is like living with ME/CFS and want to see you get well. My doubts concern their apparent claim to understand what it is that makes and keeps PwME ill, and what that understanding bodes for your future and the future of anyone with ME/CFS they may come into contact with.

Their claim that the body needs to be retrained to understand that it is safe to start functioning again is unverifiable, and I can't conceive of any way in which it would be verifiable, unlike many biomedical theories about the causes of ME/CFS. It's also potentially harmful if it pushes people towards "functioning" before they're physically ready for it.

You attribute your decline to your determination to keep working when you definitely weren't well enough. That's a perfectly reasonable explanation; when people are physically ill, the burden of working can often be expected to exacerbate the symptoms of their illness. According to their interpretation, though, your decline is merely a consequence of you (or should that be your body?) having erroneously believed that working was causing an exacerbation of your symptoms. If you ask them whether this is in fact their interpretation and they deny it then the whole edifice they have erected about your body having to be retrained to understand that it is safe to start functioning again begins to totter.

I don't doubt that they want to help you; I just doubt whether people with such a far-fetched, and potentially harmful, belief system about the nature of the illness being experienced by people they are dealing with every day are the best people to be offering them help in the first place.
 

Ellie_Finesse

Senior Member
Messages
192
Location
UK
Hi @katiecupcake

At the end if the day you have to do what you feel is right for you. Everyone who has commented on this thread are giving words of caution, in regards to retraining the brain to cure you. Sometimes it may not come accross that way because its so easy to misinterpret text. They have so much knowledge and experience here on PR! My advice would be take as much of it in as possible and use it to your advantage.

Good luck and I really hope things work out ok for you in regards to your treatment :)
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
To the cost of tens of millions of patients worldwide, there is no evidence based treatment for CFS/ME anywhere in the world. No NHS hospital or clinic will tell you this, because they don't believe that. They believe exaggerated claims in medical journals by authors, based on non science (responses to questionnaires) in patients, reporting Chronic Fatigue, diagnosed without any tests!

Honest, biomedical CFS researchers (at this point in time) have failed, since 1988, to come up with a single science based proven treatment for CFS including the Americans, the world's most powerful and wealthy nation. This is the truth, and cannot be papered over by any motivational coach, CBT 'expert' or psychotherapist who tells you ''most people recover''. Your reply is, ''recover from what''? And then ask, ''what tests did they have, how do you know they had the same illness as me?''. Then they tend to go quiet, or they become hostile, as their therapy manual instructs them, patients who don't 'engage' with the therapy won't recover.

Convenient? Yes. In other words, ME CFS patients who don't accept the foolish idea from 'specialist CFS centers' in the UK, are made to be bad patients. This is my experience. Severe ME patients fail (due to the disease) and people who recover, don't even have your disease in the first place! Yet we are all told to re-think, beliefs, beliefs we don't even have and that we instinctively know is wrong: (Pain is good, being unable to breath properly is good, sneezing and getting raised lymph glands is good, tachycardia and low blood pressure is good, vertigo is good, increased seizures is good etc).

The symptoms I just wrote, are just a few of the pathological reactions in ME CFS, to increased exertion, increased brain activity or upright posture in POTS). This is due to the underlying disease processes (Severe ME patients likely have multiple, novel autoimmune diseases). We are promised this is OK, nothing will happen if you back off, and then try again. What if you never recover? They have then harmed you. You are rejected and leave a failure (this is my experience). Is that a therapy or is it harmful? It's harmful physically and psychologically as you are made to feel a failure, by these 'specialist centres', who naturally now you are housebound from GET, can't help you! They've hurt you, and have no abily to reverse what they've done!!! What I learnt then, is instead of apologizing, they blame you, call you a somatizer, say you don't attend follow up appointments etc. This causes worse doctor patient relationships with your GP, who then insinuates, you aren't trying hard enough. That is bad practice, but inevitable. No tests are in place, no patient can 'prove' how sick they are, we are at the mercy of empathic doctors. Try and find these routinely when you're severely affected.

There is nothing you can do as a patient in the UK to recover using medical drugs (NICE guidelines warn against biomedical drug intervention, such as anti-virals),to stop this flood of symptoms, until there is a proven drug therapy. This requires years, decades of biomedical research, looking at the correct group (subset), not a wide, unrelated group of people, told they have something called 'CFS/ME', using no tests. (That isn't medicine or science, it's guess work).

The only evidence on the effectiveness of CBT/GET in mentally Ill patients with Chronic Fatigue (Not CFS/ME), diagnosed using psychiatric F48.0 coding, NOT G93.3 coding, failed to demonstrate any benefit, it has a null (zero) effect. This was demonstrated in the now infamous £5million PACE trial, arguably which should never have been funded by the British public.

On the basis that Chronic Fatigue psych criteria patients (F48.0) who were hand picked by psychiatric field researchers, patients who included people with active depression (should be excluded from a diagnosis of CFS/ME), failed to benefit from CBT/GET, demonstrates that when used in a non mental illness like ME or severe ME, the results will be even worse, as then you have a biological disease on top, of F48.0 Psychogenic Chronic Fatigue!

The current non evidence based system, the UK NHS system has in place, be it at Leeds NHS (or anywhere else) is based on the fraudulent BPS theory of ME as Chronic Fatigue caused by ''fear avoidance'' (ideas of de conditioning explaining the symptoms), and can be 'overcome' by positive thinking, sleep hygeine, and avoiding stress, is so laughable, it's actually scary when you consider what untreated autoimmune disease and infection does to the human body, over decades in ME sufferers. (Causes irreparable damage to tissue, bone, blood vessels etc). Also add in pelvic inflammatory disease in females, development of multiple allergies, including MAST cell disorders, and the whole situation is just terrible.

That is why it's critical that people with biological CFS and ME, challenge the doctors and therapists who force them (coerce them) into potential further suffering, by misleading the ME CFS patient, that CBT/GET therapy is proven, and evidence based. It simply isn't! These were claims made in the 1990's by psychiatrists, that sadly, became part of the British NHS system via ME being drawn into 'CFS/ME', on the orders of the UK Department of Health, they themselves, influenced by Anti ME and Pro CFS Psychiatrists (they lobbied multiple government departments, including the social security DSS (now DWP) telling them not to allow ME to be seperate from the new idea of 'CFS'. Despite these henious acts, there never was any evidence for BPS theory CFS as explaining ME, or even explaining G93.3 CFS, shall we say, CDC CFS. The entire idea of BPS theory 'CFS' equating to ME is made up, manufactured.

At this point in time in history, if I was a person with ME CFS being advised and assured that CBT/GET at any NHS hospital trust facility is ''safe'' ''effective'' and 'reduces'' symptoms, I would get this claim in writing (ask the clinical lead to sign the letter) and then give this letter to a human rights lawyer, after making multiple copies.

A person willing to act as your advocate on a medico-legal basis can then right to any hospital who copies the fraudulent claims of the PACE trial (on review, it had a zero beneficial effect), and demand scientific evidence that CBT/GET is effective (the opposite of PACE), and that if they cannot and will not provide you with this evidence (They can't as it doesn't exist) they write the patient a letter of apology, explaining they misled the patient into an unproven and experimental 'therapy' with no scientific evidence in place, to back up the claims of it's efficacy and safety.

Until patients do this, many children and adults will continue to be hoodwinked and sold a false therapy, which in subsets of patients with severe disease, could eve be fatal, because the message is to ignore your symptoms and to ignore them, you need CBT to alter your mindset.

For a neuroinflammatory disease, this is very dangerous to the patient. In the future CBT/GET will be outlawed, when it is provided on the basis that the diseases inside CFS and ME, are ''maintained'' by the patients beliefs, and lead to doing less, due to ''fear'' of activity. That is why CBT/GET was introduced, it wasn't introduced (such as with heart failure or cancer) to be given to a few select patients who develop maladaptive coping strategies, it was introduced by psychiatrists who said the disease ME was a ''myth'' and that there is no disease process keeping patients sick, and what keeps patients sick is their ''fear'' of exercise.

In this day and age, that is quite bizarre to believe that, when over 5,000 published biomedical research papers on 'CFS' disagree, and when over decades, in the worst cases patients with ME, Lyme and CFS sadly die from the untreated and unrecognized crippling disease.

Thus CBT/GET to ''treat'' the condition by allegedly ''improving symptoms'' is not only scientifically redundant and dangerous, it' also a gross insult to patients, and patients whenever possible, need to calmly but assertively make their feelings known, to any health care systems that hand out CBT/GET, as if it was a safe, harmless therapy for all.

I did this years ago and yes, they failed to sign any letter that stated they were confident of their claims! Think why they refused, because they knew all along, the whole thing was hogwash, and were not confident that their claims of CBT/GET were safe, effective and had no risk. Hence, it should not be prescribed, only in patients who have developed, mental illness and actually are operating much lower than they should be.

In all my years of illness, all the patients i have met live within their boundaries, and work at their optimal maximum energy window and require no 'training' and don't need to 'learn' how to do anything, because they know their own bodies, and know their own limits.

GET for a patient working at their optimal energy window limit (as we all do, as we are biologically ill) pushes patients over their limit, leads to increased symptoms and relapses (lasting months or years) and is thus a form of medically induced punishment for not being believed. No different than prescribing coca cola for diabetes actually.

MS patients aren't prescribed CBT/GET to treat 'faulty illness beliefs' that MS is maintained by avoiding doing anything because the MS sufferer has chronic fatigue and disabling symptoms, so it shouldn't be prescribed for ME either. In psych CFS, it didn't even work (see PACE trial null effect) so it shouldn't be prescribed to the mentally ill either, only in exceptional cases if a person was known to be totally recovered or well, would CBT be safe to prescribe. Yet with no test for ME or CFS, how do we know how ill the patient is? And that's why it's so dangerous to use CBT/GET, because no one knows how the body will respond, how long relapses last, and what the effect will be.

We need to do more research and throw away the idea that people with ME CFS are exhausted, because they think they are (due to phobias and avoidance), this in itself, is a form of medical discrimination and should be prohibited.

Hopefully one day, but hope is not enough, we need funding for biomedical research and for the little we have, not to be siphoned off into 25 year null result mind-body therapy.
 
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15,786
I have not asked for a wheelchair as I don't feel I need it - I'm usually all or nothing, totally stuck in bed too tired to wash and dress, or able to stand by myself (even if not for a long time). The help is available should I want it.
"All or nothing" isn't pacing. And standing up too long can trigger a crash just like any other exertion. Have you ever tried measuring your blood pressure and/or heart rate when doing that? The heart rate results would probably look like you're doing the equivalent of running a marathon, while having the blood pressure of someone in the A&E (ER) with traumatic blood loss.

Wheelchairs are not just for people who cannot stand or walk at all. They are also for people who suffer from standing and walking too much. In earlier posts on your blog, you say that you can go out sometimes, but then are too sick to get out of bed for days afterward. That is why myself and others with ME use wheelchairs - so we can go out without making ourselves sicker.

Instead of worrying about a good drop-off point, and the distance to your seat, and queues (lines) ... why not sit down for all of that? In the US there are even wheelchair seating areas at concert venues which are both accessible and with a line of sight which won't be blocked when everyone stands up. No worrying, no exerting, no annoyances, no crash afterward. It makes a world of difference. I can even go for hours-long "walks" with my fiance now, either around the neighborhood and huge wooded park, or when on vacation. A wheelchair brings me a lot closer to having a more normal life.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
TIRED SAM: Thank you for the pacing link, I'll check it out! I think self-study would be good for me. I'm not consistently well enough to attend a group (it was offered to me for fibro and I could never make it lol). Yeah I understand what you mean that a lot of energy could be spent working on the psych angle. We have so little energy spare as it is, we want to be 'barking up the right tree' so to speak, I guess! x
You don't have to attend the group, it's an online email list type thing. @hellytheelephant is doing it now and writing a blog about it:

http://forums.phoenixrising.me/index.php?entries/the-cfidsselfhelp-org-introductory-course-–-part-2.1897/

I agree about watching TV not being real rest, that's something I learnt on the above course.

Welcome to PR by the way :), and thanks for taking the time to share your experiences. Don't worry about the barrage of responses (some of them expressed rather directly) every time a word beginning with "psych-" is mentioned, it's nothing personal, or if it is it's based on concern that another one of our number may be led up a very harmful garden path (by well-meaning but deluded professionals), as described very well by various posters above.
 
Messages
68
Location
Wales uk
The problem seem to be the disconnect between what health "professionals" are meant to be seen to pay lip service to i.e M.E is a physical illness and the reality of what the majority actually believe.

.......

The occupational therapist telephoned my partner and carer two weeks later. My partner asked about devices to help around the house - she told her in no uncertain terms that what should be offered is CBT and GET and that they could visit to discuss! Needless to say we now avoid the surgery at all costs and I suspect many others in the UK to the same.

I am not an isolated case, another forum member Woolypigs is a patient at the same surgery and has experienced the local fatigue service mafia - and yet this is the best in the area - the others are worse...
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If your in the uk which I think you are when the MEA has prints off there 'clinical guidance leaflets back in print I suggest you order a couple of copies for your GP practice. They are very good for educating those in the medical profession about what is needed...