Name: Luke* Country: UK
In the early days of being ill (when it was originally thought that I was suffering from acute stress), I was advised by my GP to take longer and longer walks each day. This I faithfully did, until one day my legs gave way suddenly and completely, pitching me onto the roadside.
Fortunately, living "in the sticks", with rarely a car passing by on the tiny backroads, I wasn't involved in an accident. It took a good fifteen minutes or so for enough strength to return for me to be able to stumble to the nearby post office, where I was immediately offered a chair and a glass of water. It was a further twenty minutes or more before I was able to struggle home.
This event turned out to be a landmark in the further downturn of my condition.
I was also offered half a dozen sessions of counselling on the NHS, during which the counsellor (bless 'im) attempted to teach me to juggle. Although I approached the task with dogged determination, I was completely unable to learn, because of marked loss of coordination, bad balance, lack of muscle strength, difficulty with concentration and visual disturbances (not to mention the blinding headaches etc.) and rapid exhaustion, which, of course, all made me feel even worse physically, not better.
With hindsight, I realise that both these attempted activities were beyond my capabilities at that time, and may actually have done me long-term harm. I clearly allowed myself to be pushed too far, and that, I am sure, was ironically because of my usual determination to solve problems, overcome obstacles and do a job properly.
Nowadays, although I still have a similar determined approach to life, it is no longer "terrier-like", but gently persistent - and realistic. My concern about approaches to treatment for M.E. such as CBT is that patients are "persuaded", against their better judgment and experience, to attempt far more than they are actually physically capable of, being made to feel that they have the "wrong" attitude of mind.
As a result of following a course of CBT years ago (although it helped me psychologically to cope with being ill), I tried persistently to not use my walking stick for some time. Again, with hindsight, this made my walking problems worse.
I can't blame anyone for what happened to me in the early days, to be honest, because these "treatments" may well be very appropriate for, and beneficial to, someone suffering from stress, anxiety, depression etc. But they clearly weren't appropriate for someone in my condition.
Name: Suzy [from Invest in ME]
‘A nasty deterioration started to set in quickly. Apart from other worsening problems that Suzy began to experience, she found herself needing to lie down for most of the day since any activity, physical or mental, was becoming impossible.
Less than a year on from the start of this bad deterioration, the illness turned into a nightmare of the worst kind.
The months dragged by. For the first two years they saw Suzanne deteriorating in her bed-bound existence, often unable to communicate (let alone hold a spoon) even by blinking or finger movement.
By the time 8 months had passed Suzanne could only manage to wake up for about 2 or 3 ten minute periods----- if we were lucky ----- out of each of the two separate hours in the day we chose to try and wake her. In order for this to happen Mum or Dad had to spend 3 hours sitting quite still and silent in the cold dark beside her bed.
Eventually (making it sound much simpler than the choice actually was) we decided to reduce this procedure to just once a day instead of twice, and to aim for one hour of time awake for Suzy between 7 and 8 in the evenings.
As before, Suzy would only wake up after Mum or Dad had sat beside her bed for 3 hours gently trying, very occasionally, to coax her out of her comatose state.
We gradually reduced this 3 hour period, but it took over 18 months (until around June 2004) of painfully slow improvement in Suzy's state, for us to dispense with it altogether.
Suzy's motivation for waking had always been that she was desperate to try to eat (even though this wasn't always possible), as she was so fearful of being tube fed as we were told must be the case----- just as she begged us not to let her be hospitalised, as this was also something we were facing.
(It's only by understanding gained from living with this condition that our desperation to keep our daughter at home could be understood.)
Suzy was in a "living death" state for the first two years after her illness became really severe. Many would still regard her as such since her condition remains very sad.
Even up to around October 2004, two people in the room or one person stringing more than three sentences together was too much for her. Thankfully, things in this respect have now improved. Though the two people are still mostly restricted to Mum and Dad, wonderful exceptions have begun to happen recently for 10 - 15 minutes later in the day.
Suzy's life was, and still is (except for her fans no longer being continually on), spent in a perpetually darkened, unheated, noise-free room. There are blankets over the curtains---- despite it being a north facing room; bedside fans are periodically on---- even though she only wears thin short-sleeved T-shirts all year round and; ear plugs in----- even though the room is in a very quiet location). (…)
There is a positive movement---- albeit inconsistent---- undoubtedly happening in Suzy's condition. In fact recently it is happening relatively quickly. We are just so frightened of when and where it might stop.
We feel this improvement has emerged because of our developing confidence in being able to reject [psychiatrically based] medical approaches to Suzy's severe ME, and to the departures we chose to make from these treatments. (…)
2. We were certain that the graded exercise program Suzy followed in the early stages of her ME was a big mistake. We had no hesitation in no longer sticking to any kind of graded exercise routine. Instead we took the approach of letting Suzy do what she felt she could do----- which for nearly two years was nothing at all. This is a second option we are convinced we made the right choice over.
3. Stopping the involvement of psychologists
A third decision we know to have been the right decision, was to stop the involvement of psychologists in an illness we are convinced is not psychological.’
Name:
Ken Country: Australia
There is good CBT and bad CBT. The critical difference between the two is the issue is control. In spite of what many esteemed professionals think, most PWC's know their condition better than anyone else. Most tend to overestimate their capacity. CBT or GET that pushes a PWC is likely to fail, through relapse, withdrawal or refusal. Sensitive, responsive therapy may help, but lets be realistic here. Any gains made are likely to be modest at best - if you doubt it, look at the research.
Scientists get excited about "statistical significance", but the actual size of this difference is always small, if it is found at all.
Name: Emma [from Invest in ME]
‘This was the second paediatrician I had spoken to, the first wanted to repeat all the blood tests from a few weeks before, and was suggesting anti-depressants and a hospital stay before he'd even seen her. Emma was now so noise sensitive that I couldn't listen to the radio at home and the thrice-daily playtime at the nearby school would reduce her to tears. She was also very light sensitive and had the curtains permanently drawn. Bright lights or sunshine made her to weep with pain. Hospital would be agonising.
We borrowed a wheelchair from the Red Cross, bless them, to get to appointments, and to escape from the flat we went out using my new toy, a bat detector. Fortunately there was a roost just up the road that was accessible by wheelchair and bats like it quiet and dark too.
Some time around May or June 2003 I got a letter from social services asking me to contact them. In my innocence I thought it was a follow up to our claim for DLA (Disability Living Allowance), so from the disability team offering support. Not a bit of it, my sister had reported me for suspected Munchausen's by Proxy. The fact that she hadn't seen us for two years hadn't held her back. So to add to the difficulties of dealing with the school, the benefits system, a paediatrician from hell and a sick child, I now had to deal with a social services investigation. Fortunately, I laughed it off and suggested they check their files - we'd been there before when I wouldn't play ball with my dysfunctional family and that social worker had decided that I deserved sympathy: she found my family overbearing. I heard no more about the investigation, just silence. But it meant that I felt as if I couldn't contact Social Services for support in case I reopened that particular can of worms.
We also had a visit from the medical examiner from DLA. I'd read such horror stories of DLA being turned down that I pushed Emma to overdo it the day before so he could see how ill she really was. It was a mistake. She was back to having full body spasms, having to be held down on the bed so that she didn't involuntarily flick herself off on to the floor. It also took weeks to recover.
Another little humiliation was the monthly visit from the Educational Welfare Officer. He was pleasant enough, but the permanent checking up by officialdom was not. It also used energy better spent constructively.
This isn't all doom and gloom. Now, in April 2005, my daughter is much better and is doing her best to "pass as normal" at college. She's attending part time, taking 3 AS levels to add to the 5 GCSEs she passed well last summer. It has taken all this time inching forward to get this far, including over a year using a wheelchair. We passed on the GET (graded exercise therapy) and CBT (cognitive behaviour therapy), which was all that was on offer and relied on pacing and diet as treatment - going it alone.’
Name:
Teresa Foley, PsyD
I am a doctor of psychology, and never did like cbt but it is being used because there is [sometimes] a short term gain which is mislabeled as success. Then another symptom appears and cbt is used again. It is short term and the insurance companies like it. The insurance companies and the drug companies decide what "works"; despite the research to the contrary, they continue to pay for cbt but not psychodynamic approaches, which I feel are most beneficial. When someone has this illness, it helps to be listened to, and heard, and then to check in and repeat what was said in a different statement to check and see if the therapist is following the client.
I cannot see how beneficial it is to blame to patient as in: what are your thought forms/schemas and what is the antecedent that led to your disorder, and then finally the solution. NOPE. It nicely puts a ribbon on a difficult situation and blames the patient in the process. As if the thought forms caused the "problem". I believe we create our reality in relationship to other people and outside influences.That is why cbt is so narrow and in the end does not work. If the therapist instead met the client at the point of reality that is the client's reality and followed from there, it empowers the client, educates the therapist, and a new reality comes bursting from this interaction providing there is sufficient therapeutic alliance.
I have had ME/CFIDS for several years. Over that period, there have been several therapists who did their best at getting me into "a happy mood, strategies for living, and the original story/or theme that caused the depression. antecedent, behavior, and response." The idea that I had several ways to interpret my "condition" was pejorative at the least. It is v easy to be a therapist who has never been taught to be with those who have chronic illness. Just be with the person, not try to fix it. It isn't fixable, but resources are welcome.
