Thursday, 1 August 2013

Tips for dealing with people in pain

I'm taking this from a Facebook group. The author is apparently unknown. It's highly relevant to myself, as I am sure it is to many M.E.  and Fibro patients. For me it's Hypermobility that causes me the most pain though, so point 11 is particularly poignant.

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening
and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge ( place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

Wednesday, 17 July 2013

One step forward, two steps back.

In 2010 I was still a patient under Dr Niklaus. His search for an M.E. specialist in our area had proved to be fruitless. As such he suggested I contact the M.E. Association to enquire as to whether they could recommend a clinic in our vicinity; then he would refer me privately. We were advised that The Fatigue Clinic (also the Diabetes Clinic) at the George Eliot Hospital in Nuneaton was the nearest well referenced specialist that would suit me. As such, Dr Niklaus made this referral.

Part of the reason that my GP wished to refer me privately was because we knew I would not remain under his care for much longer. I was in the process of getting divorced, and the house I had lived in for the last eight years was up for sale. Once it sold, the reality was that I would no longer live in the area as I could not afford to do so on my own. So, we were a little perplexed when eight months later we still had not received any word from the clinic at all. Dr Niklaus chased up the appointment and found that I'd been placed on their NHS waiting list. The waiting list was amazingly long, because Dr Patel is very popular, but this did at least mean that I wouldn't have to pay for the appointment.

Eventually I had my first appointment with them in March of 2012. The doctor I saw was newly qualified. She had not heard of M.E., and told me that I had been ill for too long; that there was nothing she would be able to do to help me. I was absolutely gutted; I'd spent the last year hoping that they would be able to help, and the result seemed to be that I'd wasted a lot of time.

I was therefore rather surprised when I was called in to the hospital a few weeks later for adreno-cortisol tests. I explained to the doctor performing the test that I had lost a pregnancy a few days previously, so the test results may be a little wonky.

I had half expected this test to show something. I had previously asked Dr Niklaus if we could look into Adreno-Fatigue Syndrome, but we never actually got around to doing so.

Three months later I had another appointment with the clinic. This is when I met Dr Patel for the first time; my specialist. He has an amazing manner. He's humorous, and related to me very easily. He discussed the findings with me and my partner in terms that we both understood with ease. The adreno-cortisol had not found any adrenalin related problems. However, when they did the test they used the blood sample to run further tests. These tests had given some results.

Firstly, my Vitamin B levels were low.

Secondly, my thyroid hormone conversion does not work efficiently. Hypothyroidism and hyperthyroidism are common illnesses that most people have heard of. I've been treated for Hypothyroidism for years, as my T4 levels are always low. The tests that Dr Patel's clinic ran showed that despite raising my T4 levels artificially, my T3 levels were still low. Our bodies create T3 by converting T4 into it. My body does not do this properly. It is a less common problem. The treatment for it is a drug called Liothyronine. Only specialists can prescribe this. With good reason.

I was supposed to see Dr Patel again three months later, taking with me results from another batch of blood tests that would assess how well the Liothyronine (and Vitamin B injections) was doing.

For the first few weeks on Liothyronine I felt on top of the world. It was amazing; as if my body had been starving for this drug all my life. I started fantasising about getting my life back on track, building a career, having hobbies etc. I was brought back to earth with a bump, when I started to feel quite ill. I just assumed that it was an M.E. relapse. It replicated it in almost every way. I was sensitive to sound and light. Every movement I made, made me feel seasick. I ended up lying on the bedroom floor for days, feeling too unwell to move, eat .. anything.

I don't remember how, but I got myself to the surgery to have the blood test in preparation for the specialists appointment. A day or two later my GP phoned me. The lab had contacted him as a matter of urgency; my blood sample had showed extremely toxic levels of T3. I'd been poisoned. This certainly explained why I'd been feeling ill. I stopped taking the Liothyronine straight away, but it took a while for me to recover.

As such, I was not well enough to get to the next specialist appointment and had to reschedule.

Please note: I do not blame Dr Patel for the Liothyronine overdose. The blood sample that lead to his prescription of this medication was taken when my body was in a state of utter turmoil; when a body loses a pregnancy all sorts of things happen to the endocrine system. It was not Dr Patel who performed the adreno-cortisol test. I think the doctor who did, forgot to write on my notes the circumstances. As such Dr Patel was unaware.

I've just had the rescheduled appointment with the clinic; a year after my last appointment. I am, once again, a little less than impressed.

As with most hospital appointments I was called in to an office to have my blood pressure and weight taken. I explained to the nurse that she needed to take my blood pressure standing up as well as sitting down because I suffer with Orthostatic Intolerance. She ignored me, only taking it when I was seated.

We were then called in to a doctor's office. I was confused. The doctor didn't look at all as I remembered Dr Patel. And his manner was significantly different. It wasn't until my partner said to him "We were expecting to see Dr Patel" that it clicked. He introduced himself as Dr Nair. (And for the record, they look nothing alike; it's simply that I was struggling with brainfog at the time). He sat and stared at us for what felt like an age, eventually asking us what we wanted from him. I didn't know what to say. I was totally confused. As far as I was concerned I was supposed to be seeing Dr Patel; a specialist who was familiar with my case.

You see, when I left the area I had been living in, under Dr Niklaus's care, I was fortunate enough to fall under the care of an absolutely fantastic GP. My current GP personally knows Dr Patel. As such my case has been discussed a little during private functions. I had actually been really looking forward to making breakthroughs with Dr Patel and my GP. My GP and I had discussed at some length what I should discuss with Dr Patel, and what to ask of him.

Dr Patel had prescribed Gabapentin for me, at night, because my daytime medication, Tramadol, keeps me awake. For about six months it worked really well, but it's effect has been wearing off over the last few months. As such we wished to suggest that I move to a low dose of Amitryptiline. I explained this to Dr Nair. He nodded and said he'd write me a prescription for it, and scribbled some notes.

A Sexual Health clinic had suggested that I see an endocrinologist because of a totally unrelated problem. My GP explained to me that Dr Patel is an endocrinologist, so when I see him, to raise this issue, asking him to test my progesterone and oestrogen levels. So, obviously, I asked Dr Nair for these tests. He nodded, scribbled some notes, and gave me a slip to take to the hospital's phlebotomy laboratory to have some blood taken.

He had absolutely no idea of my history, asking me to tell him. When I explained what had happened with the Liothyronine he smirked and said to me patronisingly "So you feel you were poisoned!" whilst scribbling some notes. This riled me. No! I did not FEEL I had been poisoned. My blood tests had showed toxic levels of hormone. I had actually personally thought I was just having an M.E. relapse. He's the perfect example of a doctor who simply doesn't take what patients say seriously, assuming that he automatically knows better.

My partner and I left his office and sat down outside. We were asked by one of the staff why we'd sat down, so we explained that we were waiting for the prescription, and asked what to do with the blood test slip. He should have given me the prescription for Amitryptiline while I was in the appointment with him. And of course, the hospital phlebotomy clinic had closed for the day; the blood slip he'd given us, only being usable in the hospital. Not only that, but he'd only requested T3 and T4 levels to be taken. There was no suggestion of Progesterone and Oestrogen.

One of the nurses who had been behind the desk took the blood sample for us; the first time she'd done so for months, or years, she told us. (I hardly felt it, however). My partner was absolutely livid. He demanded that we see Dr Patel, since I'd been waiting a year for this follow up appointment, which had ended up being a total waste of time. He'd had to take time off work to take me to the appointment. Unfortunately though, Dr Patel had rounds after clinic; and still had a queue to get through before clinic would be finished. There was simply no way that we could see him.

Today I saw my GP. He wasn't particularly pleased that I'd not seen Dr Patel either. He's heard of Dr Nair, but nothing good. At the moment I'm uncertain of whether to make a complaint against Dr Nair. I don't wish to complain against the clinic, because I value Dr Patel's treatment too highly; though I do think it out of order for the nurse to ignore me when I tell her I suffer from OI, and for us to be sent in to see a different doctor without any warning. But when someone has waited a year for an appointment, and ten years to see a specialist on their condition, to be treated the way that Dr Nair treated me is totally unreasonable. Because of Dr Nair, I went a week without pain medication; which, as you can imagine, was an arduous experience. I would prefer for another doctor, with a similar approach to Dr Patel's, to take his place. With two doctors in the clinic whom people desire to see equally, those waiting lists would hopefully reduce.

So anyway, once again, I'm waiting to see Dr Patel. And my poor GP is trying to tweak my medication with me while we wait.

Raise money for cancer!

A friend of mine is doing The Rose Walk. It's a sponsored walk to raise money for the Cancer unit in her locality; la Fondation du CSSS de Gatineau (the Foundation of the CSSS of Gatineau). She lives in Gatineau, in Canada. The walk is 30km. All those participating in the walk are to raise $1000 (Canadian), as such I am looking to you to sponsor her with me.

The money raised will go towards the Cancer Unit's Pathology Lab, and to purchase post operative gowns for the Breast Cancer Unit.

Since I cannot do sponsored events myself, all I can do is implore you lovely people to sponsor my friends as and when they participate in sponsored events.

The process for entering your card details is also in French. You can either use Google Translate to help you through, or contact me and I'll go through the process with you by IM.

Thursday, 11 July 2013

Pain is a pain in the everything.

Originally, I was prescribed Tramadol four times a day. I found that Tramadol keeps me awake though, so I reduced this dose to three times a day. This of course meant that I needed a different pain killer at night. I was prescribed Gabapentin by my specialist, last year.

It worked well to start with, but over the year it's diminished. Rather than increase the dose I requested, last week, to change to a more commonly used medication; Amitryptiline. He had no problem with this, but along with everything else he forgot to do, he forgot to write the prescription for this. (I hasten to add that this was NOT Dr Patel at the George Eliot). I left a note for my GP on the way home from the specialist appointment, telling him that I now had no pain medication for night-time, asking him if he could write the prescription for Amitryptiline for me. It's a commonly used drug, one which he's prescribed for me before under different circumstances.

So, I expected to spend the weekend without pain medication. Come Monday though, there was no prescription for me, and of course I can't get an appointment with, or speak with, my GP about it for weeks.

At the same time, of course, my Tramadol is running low. So I put in a request for a repeat of Tramadol on Monday, too. For some reason it seems particularly difficult to get a repeat of Tramadol. I don't know why it's so controversial. I've been assured that it isn't the cost of the drug. So, because I know it takes ages for the Tramadol prescription to come through, I've reduced the dose of Tramadol, to twice a day.

So, for a week now, I've been on less than half the pain medication my body has become accustomed to. It's very easy to say that I'm not addicted to these pain medications. I'm not ... not specifically addicted to Tramadol and Gabapentin, anyway. However, my body now requires pain relief of some sort. Last time something similar happened, I sought relief from Codeine Plus, or something like that, which helped a little. I only have Ibuprofen available at the moment though, which doesn't seem to do much at all.

So, I AM IN PAIN. I have a stabbing pain straight through my head (withdrawal no doubt). My entire body feels horrible. Obviously, the pain that the medications help with has come back with a vengeance. But, my body feels like it's starving, too, an experience I have never desired to repeat. Standing up feels uncomfortable, as if I'm unable to breath. Yet my breathing is unaffected.

I can't remain in one position for more than a few minutes, but I cannot explain why. Nothing feels right. This is the hypermobility. Before taking pain medication I was used to this feeling, and hadn't even realised I was in such significant discomfort. Every joint in my body feels ... loose. I can feel each tiny movement, some feel like they're grating, some feel like they're swimming. Subluxations have become a lot more common throughout this period of pain and discomfort.

And of course, with pain and discomfort comes the lack of sleep.

I'm so tired of fighting to live a normal life. Not just striving, but fighting the NHS and DWP. I have to argue my case over and over and over again, to get the simplest of things. This medication change is just one example, among many. I do at least have a GP who is working with me now, despite it feeling as if he's doing it so slowly. I've been ill since 2002: This is the first time someone is taking me seriously.

Monday, 1 July 2013

Let's judge the disabled!

Honestly, I don't really know why I'm writing this post. I feel like I need to warn people I suppose, that's all.

A few months ago I contacted DIAL about my DLA application. I had just been turned down when I applied myself, and had absolutely no income.

There is a huge stigmatism around benefits in the UK at the moment. As such a lot of genuinely sick and disabled people are being declined benefits that they genuinely need. The media has done a very good job of turning every day normal people against the sick and disabled. People who would normally help someone they actually see in distress are begrudging those people the tiny amount of money that they need for simple things like food. People are starving, food banks are at breaking point. Anyway ...

I am disabled. I've spent years trying to deny it to myself, but in the last few years I've been forced to admit it. Even my family, who's had their head in the sand over the fact that I'm ill, has started recognising that I have these problems. I'm disabled!

I have M.E. and Fibromylagia. I am hypermobile and have recurring back problems. I have PSTD and suffer with severe anxiety attacks. I am in constant pain, which is only partly relieved by very strong pain killers. The severity fluctuates; on my best days I can potter about the house a bit, maybe even go for a walk. On my worst days I have to knock myself out for the day to avoid the agony. I suffer with fatigue and exhaustion the like of which you can only imagine if you've actually experienced it yourself. Walking is painful. Remaining in any position for more than 15 minutes is painful. The fatigue means I struggle to meet any expectations placed on me (doctor's appointments, shopping trips, taking medication at designated times, etc). It means that I frequently have problems performing simple tasks or formulating sentences. I'm often mistaken for being drunk. (I don't drink).

Being disabled is hard. Even if you're not disabled, having a long term illness is hard. You have doctor's and specialists whom you try to keep happy. It's human nature to wear a mask, leading people to believe that things are better than they are. That doesn't apply any less to sick or disabled people. If anything it applies more.

So, you spend most of your time trying to put a positive twist on all these difficulties ... and then you have to fill in forms describing how bad things are. It is very hard to make such a huge mental u-turn. You have to scrutinise every little thing you do. For me it includes measuring how far I walk between each tick - because every tick can cause me to fall when I don't have my stick. Before filling in the form I didn't realise how frequently I was actually ticking! You end up learning that you're far more disabled than you thought you were. Really, most of us are actually in denial until we go through this process properly. As such it's very demoralising, and often causes distress and depression.

You can imagine how easy it is for those who wish to commit benefit fraud, can't you. They don't have any of these difficulties to face, just a little research into a condition, tick a few boxes, tell a few lies.

So, as I was saying, DIAL helped me with my recent DLA application. Honestly, with everything else going on in my life at the moment I'd totally forgotten about it (people dying, and my mother having strokes). I was resting in bed, my body is currently inflamed with a Fibro flare, which I have to rest off. At approximately 1pm I received a text from my boyfriend telling me that he'd had a call from someone regarding my DLA application. She told him that she'd been trying to call me, but I wasn't returning her calls. Funny thing: I've not had any missed calls! He took her details and texted them to me.

I phoned her back. Obviously she has an advantage over me, in that she knew where she was phoning from and why she was phoning, both pieces of information she refused to give me. Understandably she needed to ask me security information. Having dealt with the DWP over the last few years, both for myself and for others I'm way too familiar with how this works. She did not stick to protocol. For example, she only asked me my date of birth. Part of that protocol is to ask you which other benefits you're on - anyone trying to fake another person's ID is likely to have checked out their date of birth, address, all the obvious things; asking what benefits someone is on is not obvious, so it's an easy way to catch people out. She didn't ask this. Instead she said to me "You're receiving Carer's Allowance, aren't you!".

When she asked if I was receiving Carer's Allowance, obviously I answered that I am, because I am. She then asked me how. I did not understand this question. She went on to elaborate that my form states that I have zero mobility, and asked how I manage to care for someone if this is the case. She did not give me time to answer. Instead insisting "Do you have zero mobility or not?" Again, she did not give me time to answer, instead moving on to asking me about wheelchairs. She told me that I use a wheelchair when I go out, but that my partner cannot push it, so told me that I must push it myself, despite reading off the form to me quoting a part where it says that I can not self propel.

She kept going like this, not allowing me to get a word in edgeways, putting a twist on everything in a snide smug tone. I ended up raising my voice over her to try and communicate my actual answers to her questions. Obviously, I do not want her twisted version of things going on my record. I do not want to be turned down for DLA again, unless it's legitimately. Plus, I do not want her lies on my record as they will be referred to for future assessments. It's because of a medical assessor lying on an ESA assessment a few years ago that I have these problems to start with.

She told me that my form stated that I have expensive night time needs. I didn't and still do not know what this means. I tried to ask her, but she kept going. By this point I was crying and shaking, so I asked her to talk to my support worker instead of myself. She told me that she doesn't have to do that. I told her that I was officially asking her to. She repeated that she doesn't have to do that. Then, while I literally sobbed the request again to her, she hung up on me.

A pretty bad panic attack followed. I really do not cope well with confrontational situations. I sent a fairly vivid description of what had happened, to my boyfriend, via text, asking her to phone her back again. I also dragged myself out of bed and sent my support worker an email about it, crawling back up the stairs to bed afterwards.

My gripe is this: she knew that I was at home alone, she knew that I was bed bound at the time I was speaking to her, and she should have known that I suffer with extreme anxiety. It was her choice to push me, and deliberately wind me up the way she did.

When my partner spoke to her afterwards, firstly she told him that she wouldn't talk about it with him. She told him that he had refused to answer her questions when she had phoned him previously. This was untrue; she didn't even ask him to answer questions, she'd only said she was having difficulty contacting me. He told her that he had caused a massive panic attack, explaining that he now had to leave work to sort it out. She claimed that she did not know I suffer with anxiety. Every piece of my supporting evidence describes severe anxiety and PTSD. My form mentioned anxiety throughout. She basically told him that she didn't look at either my supporting evidence or my form before trying to contact me.

I suspect she speaks to every applicant in exactly the same way she spoke to us. I also suspect she never reads their information until she's speaking with them, thus causing a lot of anxiety issues for people similar to myself. That woman should lose her job. A position dealing with people who are sick or disabled needs someone with at least a little empathy, particularly if that job requires judging them and being responsible for their future .

So, anyone applying for DLA, please consider yourself warned about the phone call you might receive during the application process. You don't have to put your phone number on the form. Eliminating it will avoid this horrific part of the process.

Monday, 20 May 2013

Is IDS a compensatory narcissist?

For those who can't view the text in the picture on their phone, it says:

Is the Tory Work & Pensions Secretary Iain Duncan Smith a compensatory narcissist?

Here are some of the common behaviourly traits:
  • Strives for recognition and prestige to compensate for the lack of a feeling of self-worth
  • May "acquire a deprecatory attitude in which the achievements of others are ridiculed and degraded"
  • Has persisten aspirations for glory and status
  • Has a tendency to exaggerate and boast
  • Entertains fantasies of greatness
  • Covers up a sense of inadequacy and deficiency with pseudo-arrogance and pseudo-gradiosity
  • Produces work not up to the level of his abilities because of an overwhelmingly strong need for immediate gratification of success
  • Is touchy, quick to take ofeence at the slightest provocation, continually anticipating attacks, reacting with anger and fantasies or revenge when he feels himself frustrated in his need for constant admiration


Friday, 10 May 2013

Tuesday, 30 April 2013

An amazing story!

Please read Sarah-Louise's story. You are welcome to re-post her story on your own Facebook, tweet the link to my blog, whatever; let's raise awareness of how severe M.E. can be.

If you would be so generous as to sponsor her too, you will find the link after her story. She's one of the most amazing people I know, so sponsoring her means a lot to me.

There is so much I want to say! Before I became ill I hadn't even heard of M.E and the first twelve years of my life were magical and very english. Then I had a vaccination against meningitis c and my health very quickly began to fall apart. At first it was just all kinds of aches and pains, dizziness, forgetfulness, nausea, the occasional fainting spell and a lot more tiredness but within two years I had a constant migraine and I struggled to drag my legs around because they were so heavy.

Soon I couldnt walk at all and I began to 'freefall' until I was blind and had no memories. I lost all of my words and my ability to understand other people speaking. I was so exhausted even when I woke first thing that it felt like I was trying to lift buildings to try and move.

I was housebound for a year and by the end of it I could stand for 30 seconds and manage a few painful steps, but then I relapsed again and became bedbound. I didnt sit up for four months, I barely moved and I couldnt talk. I had no sense of touch and no strength in my body. I suddenly perked up in April 2004 and could sit up and read a little, I was so excited. In July 2004 I woke up to find my whole body 'on fire'. So hot it felt like I was melting, so painful I wanted to scream and scream and scream. I honestly didnt think I could bear it for one minute. So far I have been on fire for eight and a half years and counting....

At first the pain, the heat and the pressure-which made my head feel like it was gripped in a vice- was so intense that I couldnt move or speak again. For six and a half years I was silent and still, simply enduring, my hearing was so sensitive that I had to wear headphones all the time. My parenst added another door to my room and triple glazed the window. every noise was still excruciating. I had blackout blinds because the light made me physically sick. I released a strange chemical that smelt acidic and clung in clumps to my hair, pooling in white/brown patches on my skin.

I woke one day to find my hands curled in fists, rigid, paralysed and I couldnt open them.

Nothing seemed to change until 2010 when they opened enough for me to be able to use my 'claws' and I began to be able to do little things despite the fire. like read and write and go online.

I am still bedbound, although I had a little time when I could move around the house last year, and the fire has been particularly awful again this last year.

Im 25 years old and I so want to live. I could write booksworth on everything thats happened, but really all I need to say is, Invest in M.E are actually doing something to help people like me...and their are hundreds of thousands of us. We all fight the same dragon, we all want to beat it so we can be free.

And I cant even tell you how heroic my M.E friends are, what they go through and also how kind they are to other people! If you dont know them, you are missing out!

With them and the girls from my old schools, and other people Ive met along the way, I feel that I have a life rich in people. But I am a young, free spirit trapped in a body that will not work! Invest in m.e want to change that.

And as to losing the 50 lb, its something I really need to do, although I do not know who is going to keep mr.kipling in business without my help ;)

Amazing isn't it. Can you imagine being totally bedbound, unable to move, you can't cope with light, or sound, and your body is burning from head to toe - for years? 

I can't. I have M.E.. I've experienced what Sarah-Louise describes, but for me it was only a few months. I simply cannot comprehend enduring it for what must have seemed to be endless.

Sarah-Louise has suffered more than anyone should in one life time, yet all she wants to do is give! She's one of the most encouraging people I know. She's that little light blinking away at the end of the tunnel. So, please .. help her raise the money for IiME. It will make her so happy.

Sunday, 21 April 2013

Please think before complaining.

I just saw this posted on one of the benefits groups.

Feel Free to let Atos know how you feel about them .
They have a Freepost address it will cost them to hear your opinion :

Letters , Postcards ,Parcels , should be sent to the following address

Please keep all mailing polite and legal .

Wyman Dillon Research
Freepost (B57607)
B535 3YA

Please share the address.

My ONLY gripe with Atos is that their receptionists were too slow, therefore claiming that we arrived late when we didn't, and that they (Atos) tried to fob me off on my own GP for the WCA. Hardly what the benefits group are expecting people to complain about, is it. 

What they really need to be doing is complaining to the DWP!!! Atos aren't responsible for the things people have problems with. It's our flipping government!

By all means,  write to Atos at the above address IF you have a problem with them, but PLEASE check first that your gripe is with them, and not with the DWP.

  • It is the DWP, not Atos, who determine how frequently you are assessed.
  • It is the government, not Atos, who chose the ridiculous computerised system that is used (by Atos) to perform the assessments.
  • It is that computerised system, that makes the assumptions based on the boxes ticked, that usually piss people off - assumed to be "lies told  by the assessor".
  • It is the DWP, not Atos, who decide whether or not to use the recommendation that comes from the Work Capability Assessment.
  • etc.

Yes, I know there are times when the assessors do tell lies. But, before complaining to Atos about it, look carefully at the paperwork and try to determine whether it really is the assessor telling lies, or whether it is a tick box on a computer making assumptions. 

My own Atos assessor did include some blatant lies at my medical, so I did place an official complaint. These lies were mostly regarding the physical; she claimed that I was able to do things that I had not been able to do on the day, for example how far forward I was able to bend. She also claimed that I had no walking aids, when I had my stick, and that I walked with no problem to the assessment room, when I clearly fell against one of the doors. Most of what the assessor inputs manually (and therefore personally) is regarding your physical, and your personal appearance and behaviour at the assessment.

When reports contain incorrect things about these, it is fair to make a complaint to Atos, but when a report says, for example "Can fill a front loading washing machine", when the assessor has asked you no such thing, it is simply because the computer has made an assumption. By all means, go through the report and note where it is incorrect for your appeal, but there is no point in complaining about these to Atos; the government (the DWP I believe) picked that computer system, so it is their responsibility!

Similarly, if the report says "walks dog daily", when you did not tell the assessor this, consider whether you told the assessor that you have a pet dog. The computer assumes that you care for the pets you tell the assessor about; so if you are unable to walk the dog you need to specify this to the assessor. Incidentally, if you have a cat, or small animal, the computer assumes that you are capable of regular planning; you are able to feed and care for this animal in the appropriate manner every day (even if the animal is dead in it's cage, rotting, at home). You need to be specific with your assessor; that is your responsibility, not Atos, and not the DWP.

If in doubt, make a complaint to Atos, but also make a complaint to the DWP.

Incidentally, the Atos address isn't exactly secret information. If you phone them, telling them you wish to make a complaint they'll send you the GL24 form (which you can also find online), and a free post envelope.

Atos aren't a company with the primary aim of doing harm to people. They are an Information Technology Services Company. Computers!

Friday, 19 April 2013


I am well aware that I have not made any updates for a while. There's a good reason for this. Well, two good reasons.

One is personal. I think I should be honest with myself and say I'm relapsing. I keep saying it's a crash, but it's been ages now. I had a shower yesterday. That was yesterday's activity. This morning (morning by my terms is usually about 1pm) I spent ages looking for my trousers. I eventually found them; on my legs. I'm not sure whether that means I slept in them, or whether I'd already put them on and had forgotten about it. 

One of the things I hate most about M.E., is that when they hand you out the long-term-sick card, they also replace your brain with what I can only presume is liquid nitrogen. I may well be stranded in bed, but I would at least appreciate the ability to control what the hell comes out of my mouth! It's so effing well frustrating; while I lie in bed everything makes sense, yet when I try to rise, to share the ramblings that have been so perfectly articulated in my head, I cannot remember a single thing. 

Anyway, the second reason for being distant recently is that I have pretty much lost hope. In the past I have shared articles as they have cropped up, to illustrate what is happening in this country, share my opinion, my view, etc. But now ... 

Every day there is more and more being written. Every day there is more coming to light. Not just in regards to benefits, but the government. I never wanted to blog about the government, but it's all tied in to one. They're changing .... everything! They are deliberately making the poor, poorer, and the rich, richer. They're taking everything that this country has worked so hard to develop. Privatising the NHS. Selling out to commercial industry. Changing laws to suit their agenda. Creating a secret court, the like of which I'd only heard of in reference to nightmarish stories from the Soviet Union. Honestly, I believe it'll only be a matter of time before the government decides we're no long a democracy.

My fight is gone. What they're doing is so totally beyond the power of people like me, that it seems more like an act of futility, possibly even masochism, to try and fight back. I wash my hands of it.

I'm totally and utterly powerless. I have no income. I have no means of getting any income. I do not believe it is coincidence that people who like myself, have tried to level the playing field, just that little bit, find that their records have been messed up, their MPs don't care, etc.

So ok, government ... I surrender!

Wednesday, 13 March 2013

M.E. Herbalist

I bring to you today, the story of another small trader, who has M.E.. If you're interested in herbalism, or seeking herbal product from someone who understands the condition, Merionwen is the business you want to look at. Here is her story:

Around six years ago I was married, had two smashing children and a job I loved. I had spent years working in the heritage and tourism sector. I provided costumed interpretation for a variety of heritage sites. Bringing entertainment to education and a sense of fun to stuffy museums. Prancing around castles being everything from the cook to the lady of the manor.

I was lucky enough even to be able to involve my children. It was long hours and involved a lot of background research but I loved it.

Then disaster struck. I had been diagnosed with gynaecological problems and severe anaemia. I just couldn't seem to find any energy.
I continued to try to work but my lack of energy started to show the cracks in my marriage.

I devoted all my time to my children foremost and then my career. I expected support and understanding from my husband but that wasn't to be.

Eventually the marriage became untenable and we went our separate ways. I suddenly found myself cast in the role of a single mother. Financial support was non existent and work pressure increased.

This stress was then compounded by my father falling ill and what seemed at the time as a minor car accident.

I suffered serious whiplash and I was left with back pain that never seemed to recover.

Next came the constant round of tests and doctor's appointments. I kept returning asking for blood tests and a reason why I just couldn't seem to get back on my feet. I was constantly bone weary but this was coupled with the searing pain that never seems to settle in any one place. I had constant muscle burn and my fingers and toes would feel so swollen I couldn't walk or pick up a cup of tea.

this all came to a head one day when I found I couldn't wash my own hair and cried out with pain when my daughter hugged me.

So back to the gp and a long and frank discussion. It was suggested I had fibromyalgia coupled with cfs.

Further tests proved this so.

I went on to be prescribed a battery of SSRI's and painkillers.

Over the following two years I put on five stone in weight and had to give up work. I just couldn't cope with being a single Mum and live with this illness all the while keeping up with my career.

It broke my heart the last time I said goodbye to my workmates.

I felt at my lowest ebb.

But, things were about to change. Almost like a bolt from the blue I was to meet my current husband to be, Andrew. We were sat at the table of a mutual friend while I expressed my loathing of the male species. Then he smiled and made me tea.

There is more to the story than that but lets just say over time I fell deeply in love.

He opened up whole new way of thinking for me. When discussing the medication it was him that first made me question whether the side effects were not as bad if not worse than the illness itself!

I am pleased to say I am free of all synthetic medication. I take a variety of supplements and have made vast changes to my diet.

Don't get me wrong. I am by no means cured. But I do cope! Rather well at that!

It was also himself who asked why I was not trading as a herbalist. One of the key parts I have played in the past is that of an herbalist. I know the subject back to front.

I told him how EU law suggested I needed a formal qualification. So he asked "why not get one then". Frankly I had no answer to this.

I went on to study Phytotherapy at degree level, a higher diploma in massage therapy, Advanced aromatherapy and most recently cosmetology (the study of natural skincare).

I am now proud to say my chosen career is that of an holistic therapist. I am able to work at my own pace and have a good client base.

However, that was never going to be enough. Over many years I have formulated and produced my own skincare products. These have been given as gifts of used by myself.

It is now time to turn the hobby into a business.

I am launching my own range of organic, natural skincare. IT is called Merionwen and is a business I feel very passionate about. four years ago I never believed it was possible to achieve these things and live with illness.

I have proved that that is not the case. I shall make success of this and I hope everyone else who has lived with any sort of set back can take heart and see what can come to pass.

I am attempting to get Merionwen on it's feet with a crowdfunder pitch. There are a variety of splendid rewards for anyone who invests.

What could be better than organic, natural, spa quality skincare?
Well all deserve a little pampering...
You can find Merionwen here:

Thursday, 7 March 2013

See the Invisible

When you tell someone that you have M.E., most people tell you that they knew someone who had it, who had got better. Presumably most of these people are mistaken, or they all knew the same handful of people, since the rate of recovery is extremely low. Having said that, if people see you leaving the house, they presume you are better. If you fail to mention M.E. every time you see them, they presume you are better. Most people just generally assume that M.E. is a mild condition, which most people recover from with ease.

It is not. 

I've actually had people ask me why they don't see any of these really really sick people. It seems a really dumb question. It actually says quite a lot about the image M.E. has, rather than those people being particularly dumb. For example, if you assume you have flu when you actually have a cold, then you can't understand why others with the flu are throwing up, sweating hot and cold etc. You understand? It's the same with M.E.; it is NOT this mild affliction that the public have assumed it to be. The people you have known, or do know, who have M.E., particularly if you've not met them online, are most likely to be very mild cases of the syndrome.

The serious cases, those with 'moderate' or 'severe' M.E. are seldom seen. Those with extremely severe cases often can't even use a computer, so you won't even meet them online. Imagine that all you can cope with is lying in a dark room, in silence, every movement hurts. You feel constantly nauseous. Your skin burns, freezes, and itches, for no reason. You can tolerate few foods, so have either been losing or gaining weight for the duration of your illness. You practically rattle from the amount of medication you're on. Your limbs feel as if they have weights on them, and you can't tell whether you're holding something or not as your hands are not only in considerable pain, but are frequently numb too. Can you imagine how totally isolated these people feel? What are they to hope for?

A friend of mine, has been in so much pain that she has not even been able to talk. She just discovered that she can talk again, so to celebrate she made a small video. It's extremely illuminating. Please, view it. You will start to understand where the invisible sufferers are, what it is like for them:

Hello, ummm. Oh, I've made this message about three times, this video, and I have managed to cry all the way through. I am so distressed today, and I am so on fire, and I'm so shaky, and generally scared by what's happening. It's also a very very personal video, and I promised always to be very honest with you, but it's quite hard, coz the British English girl gets all sort of .. she wants to hide! Also I am fully aware of the irony of making a message like this, when I look like the wreck of the ##. But, you know, I'm sure I would scrub up all right, honestly, with .. uh ... a couple of ship loads of make up, and a hair brush would be a good start!

Anyway, the thing that I wanted to say, was that, I'm very afraid of dying. I think about it all the time. Ummm, the pain is so unendurable, and so constant, that in some ways there isn't any reason to be afraid of dying, because it would be an ending to something that is, on a daily basis, unendurable. And everyone who has M.E., is enduring the unendurable all the time. And we find things to laugh about, and we have each others, and we have our families and things like that, but it doesn't take away that the pain is constant and unrelenting and bit of a spiteful bully really.

And, and, I think about dying, and it it it terrifies me because I feel like I'm unfinished. I feel like there is so much of my life that I haven't lived yet. I got ill at 12, and was housebound by 15. I'd like to go to university. I'd like to travel, and I'd like to kiss boys(!), and I'd like to hug my friends, and to learn to fly a plane, and go up in a hot air balloon. I'd like to ride horses, I'd like to write books, I'm mean there's just so much I want to do. And life is so beautiful. The idea of not getting to actually live it is quite heartbreaking. But, when it's really really bad, I think .. well I do believe in heaven. I would probably do all of those things in heaven, except for kissing boys. And, I can't tell you what a heartache it is to think that I might die before I fall in love, before I ever really get to kiss someone. I mean I have kissed people, but it was absolutely disastrous *laugh*. Well, perhaps I shouldn't say that in case they watch this! But, it was not a fairy tale.

And, I've never danced close to someone who really matters, and no one's ever fallen in love with me, or been tender with me, or made love to me, or any of those things. And it feels like such a heartbreak to me, that I may never get those things. And, when I'm in my bed, and the fire is everywhere, even breathing becomes a mission, that's often something I think about! I think "I can't die, I can't die without knowing what all those things feel like", and I hate the idea that, in this world, because of the way doctors are neglecting people with M.E., there are hundreds, if not thousands, of young people, dying without having such ordinary and beautiful things.

I really really don't want to be one of them. But, even if I am, there are others going through it too. I mean, none of them would want to be one of the ones who didn't get those things. And it just seems so appalling to me that so little is being done, when life is so wonderful, and we would have every opportunity to live it if we weren't ill.

Thursday, 28 February 2013


I remember sitting in my bedroom as a teenager, and realising how fortunate I was to have been born into this country. We weren't starving, like they were in Ethiopia. We weren't at war, like they were in some parts of the world. We always had plenty of clean, fresh water available, and always had food on the table. Most people had a roof over their head, and those who didn't had help available. We had councils who helped people, unions that helped workers, there were safety nets in place for nearly every eventuality you could think of. We may be struggling in our every day lives, but we had it made! I realised this as a teen, and my ambition became to help people world wide who weren't so fortunate to have been born into a country like this.

Unfortunately, I no longer believe we are fortunate. I feel shame. Total and utter shame, at what this country is doing.

How much of that remains? When I try and tell certain people about the difficulties of being sick or disabled in this country, I frequently get a response along the lines of "At least you're not starving in Ethiopia". Why is it more acceptable to starve here?

Are people really starving here? YES! 
The government has pretty much gone out of it's way to eliminate any form of income for people who are sick or disabled, and have made it very difficult to get by for those who are simply working class at the minimum wage end of the spectrum. If you weren't born with a silver spoon in your mouth they see you as scum, and we are to be treated as we deserve! 

Take my own example. I cannot claim Contributions Based Employment & Support Allowance (CB-ESA), because the DWP (Department for Work & Pensions) paid my NI (National Insurance) stamp last year. Their type of stamp does not count towards benefits, only towards your pension (should you be unlucky enough to live that long). I cannot claim Income Related ESA, because I am living with someone who earns over £8000pa (the threshold is somewhere around 7000). His outgoings are not taken into account. So, the fact that his outgoings are nearly equal to his income is irrelevant. He cannot afford to support me. As such, I am currently living off hand outs. They won't last forever! There is no point at which I can suddenly claim CB-ESA, as while I'm in this situation the DWP pays my NI, thus cancelling out the possibility indefinitely. It also seems that I will be unlikely to receive DLA; the DWP are putting off giving me a decision month after month. My suspicion is that they are waiting for PIP (Personal Independence Payment); under which I definitely will not qualify. There are no other benefits available to me, no safety net to catch me, nothing. I'm not the only one, there are hundreds, probably thousands of people in this situation across the country. The inevitable is that these people will become homeless, probably starving to death.

DLA was never intended for people to live on. It was intended to be some money that helped disabled people live a normal life contributing to the community. Something those who designed PIP seem to have forgotten, despite it's all encompassing name: "Personal Independence". They have made it virtually impossible for people who are genuinely disabled, to claim. For example, one of the descriptors is that claimants be unable to walk 20m, where it used to be 50m. They have cut down the criteria similarly throughout the assessing process, and have taken out some things under which people used to qualify. They've introduced descriptors, suggesting it is now another tickbox computer based system, similar to that of ESA that assesses people.  So, unless you are wheelchair bound, and almost totally unable to do anything for yourself, you're unlikely to receive PIP. Genuinely disabled people will lose their DLA. For many this means losing their car; that is their ability to get to work. Similarly for some it's losing the money they use for public transport. For some it is money used to bring in respite carers. So many people will be very suddenly thrown into situations where life is totally unmanageable.

And yet suicide is illegal.

It isn't just DLA though, please do understand that. ESA has recently changed, making it more difficult to receive again. More changes are being brought in, in April too. At present, when you apply for ESA, if you are turned down you can appeal. You still receive some money (£70pw - the Assessment Rate) until your reconsideration, appeal, or tribunal are finished. The Assessment Rate is being scrapped. You will no longer be allowed to appeal straight away, but must have a mandatory reconsideration first. To be fair, many decisions are overturned at 'reconsidertion', BUT, the DWP has no time limit on how long their reconsideration's take; so people will be left without money indefinitely. They say that they will be processed as quickly as possible. 

No comment.

What happens when someone has no money? Probably first of all, they go hungry. The government has at least seen fit to open more food banks since they've been in power (that in itself shows us that they knew what they were doing to us); but the housebound and bedbound can't get to food banks! And what of those who have specific dietary requirements (I'm talking Coeliac, etc, not vegetarians)? The next thing that probably happens is being unable to pay the bills. The phone gets cut off, then the electricity and gas. Their landlord may be understanding to start with, but if they're sitting in his property not paying any rent, he's losing money, so at some point they get turfed out of their home. Homeless, starving, and ill or disabled. That's what our government is aiming for!

At the moment, most people can claim a Crisis Loan when they find themselves in that sort of situation (not I, due to the other half's income). So what's the government's next step? They're removing Crisis Loans too!

They're also removing Legal Aid for people going to tribunal over their ESA, DLA, or PIP, decisions. In case you're unaware, there is a long convoluted system involved here. If someone disagrees with the decision made on their application (which they usually do, since the DWP deliberately underestimates people's needs), they can appeal. The appeal goes through reconsideration, at which point it can be changed, but if it is not it goes to Tribunal. If they still disagree with the decision then they can take it to the Upper Tier Tribunal. At this level people really need legal advice, and preferably legal representation, if they want to stand a chance of winning their case (they put people through all of that, just for £90pw). And that legal advice will no longer be available; because the government don't want people to win! They don't want to spend their money on the plebs.

There's more. Much more. The so called "bed room tax" for example. I'm so sick of it. It has now got to the point where I think we'd all be better off in another country. If there was a country open to receiving us, I have no doubt that there would be a mass exodus of sick and disabled people from the UK.

I'm actually kind of surprised that there has been no attempt on the lives of any of the politicians involved with all of this change. Yes, by definition the sick and disabled would be unable to carry out such an act, but we're not the only ones who are totally incensed by it all.

I wonder whether they realise that they are backing everyone in to a corner. It's basically going to be a choice between a life of crime, a life on the streets begging, or suicide. All of which are illegal. I suspect it's the latter that they are waiting for, but I also suspect it's the life of crime that most will turn to.

Tuesday, 12 February 2013

If only they could talk

Last night I woke up with a shock when something very cold touched by nose. My head had slipped between the pillows, so my nose was the only part of me above bedding. Tinkerbell, one of my boyfriend's cats, was lying on my pillow with her nose touching mine. As I brought my hand up to stroke her she started purring enthusiastically, then turned her back on me when I returned my hand into the warmth of the bed.

Tinkerbell has somewhat of a reputation for being a difficult cat. The vets use big gloves to handle her, finding it amusing how feral she is with them. She's one of three cats. She spent her life growing up with two cats who were brother and sister, not from the same litter as herself. The two siblings always snuggled together. Tinkerbell was not allowed to join them. She was the loner.

When I joined the family I started talking to her with cat language. She responded immediately. My other half hadn't been aware of some of the nuances of what cat body language means. As such, no one had really 'talked' to Tinkerbell her entire life.

Last night she was trying to get close to me. Frequently, when my head is actually on the pillow, she will rest a paw on me, or even curl herself around my head. As she turned her back on me last night I realised that all she wants is someone to curl up with. This 'outdoor', 'feral' cat, just wants to be loved. I realised that she'd felt alone for ten years.

And my heart melted.

Friday, 11 January 2013

Vote for this please!

Dear lovely readers, please can you vote for this for my friend in a competition she's in. It's an over 60s art contest. She's submitted five pieces of work, four paintings and this sculpture. We're hoping we can get the sculpture a lot of votes.

You can place three votes; you get to say which piece of art you think should be first, second, and third place. Obviously I've placed all my votes on her pieces. I only request that you place one for this piece .. do as you wish with your other votes ... though there are hundreds of bits of art to go through!

To vote, enter your email address and a password. They'll then send you an email in which you click on a link to go and place your votes.

Pretty please :)

Wednesday, 9 January 2013

Eek! My ESA50 form's late!!!

Are you filling in the horrible ESA50 form, hoping you'll be able to claim Employment & Support Allowance? Do you have that horrible big black line on the calendar looming imminently over you? Don't worry. You can rub that line out if you have M.E. or some mental health conditions (sorry, but I don't know which ones).

This subject keeps coming up recently. Mostly because people have still only been given four weeks to fill in their ESA50 despite Christmas and New Year being in the middle of it. A lot of people are running late with their forms and panicking. I knew I had read somewhere that people with M.E. needn't worry about late forms, but I couldn't remember where. Then I found that I had saved the information to my computer ... hoorah ... but doh! 

So, I apologise, I do not know where this information came from, but do please feel free to use it. Personally, I would not recommend running anymore than a week late with your form. If you are returning your form late copy and paste the information below into a document and submit it along with your form and a letter explaining your reasons for lateness.

DWP will insist that they do not give anyone a time extension for completing the ESA50.

This is contrary to their own guidelines. In a letter to the Countess of Mar dated 21 November 2011 regarding the Incapacity Reference Guide, and the flagging of ME/CFS along with mental health conditions, the DWP stated:-

"Therefore, for the avoidance of doubt I can be clear that the Department does not classify CFS/ME as a mental health disorder. The asterisk next to CFS/ME in the Incapacity Reference Guide (IRG) is not as an indicator of its classification, but rather to alert decision makers to the fact that a proportion of people with CFS/ME have symptoms related to altered mental function. Mental health condition and those that have mental function impairment as a feature are highlighted in the IRG so that appropriate safeguards can be put in place. These safeguards include not automatically rejecting a claim to benefit should an individual fail to return the related questionnaire, together with procedures for additional contact with the claimant during their application if required."

It may be useful to quote this to the DWP when you ask for an extension, in any case ensure that they make a note of your conversation on your records, or perhaps it is better to put it in writing to them, so that, if ATOS refer your case back to DWP as a non-returned form, then they should have to take this information into account before making any decision to end your claim.

The incapacity reference guide is here:-

The correspondence with the DWP regarding ME is found here:

Should anyone know where this information came from, please let me know so that I can give the relevant credit.

Saturday, 5 January 2013

YES!! Knighthood!

I'm writing just a short post today, mostly in reference to my most recent post. I provided you the link for the petition against Dr Wessely's proposed knighthood, should you wish to sign it, and explained why I find myself a little reluctant to do so.

Someone came up with a beautiful alternative. Well, they didn't intend it to be an alternative actually, they suggested both signing that petition, and ...  doing this:

As I understand it, when someone is proposed for a knighthood, they are compared with others in the same field who have also been nominated. I could be completely wrong in that, so don't quote me on it, but I think that is what I have read somewhere.

My immediate reaction was to suggest the wonderful journalist, Sonia Poulton, for her hard work writing about M.E., describing it's difficulties so perfectly within the public eye. She's become patron of the Cheltenham "Fibro, ME/CFS Babes & Guys!" group you know! I would also personally include her awesome work raising awareness of how screwed up the benefits system is. You can read some of her work:
BUT, I have a sneaky suspicion that because Sonia Poulton is a journalist, she would not be considered comparable to The Weasel. In fact, she's raising awareness of how treacherous M.E. is, when he is (supposedly) performing research (and downplaying how serious it is). Plus, it is not just M.E. alone that he is being considered upon.

Someone else has suggested recommending Professor Hooper for knighthood instead. I felt a little embarrassed that I had never before heard of Hooper, so I did a little research. A few clicks later I had found that he has worked on M.E. (CFS) and Gulf War Syndrome amongst other conditions; so he is directly comparable to The Weasel. He is the Medical Advisor to the Grace Charity for M.E.; I would be very surprised if any M.E. organisation is associated with Wessely (unless it is one that he has created). Hooper has also stood in direct opposition to Wessely on his stance towards M.E./CFS, which of course will make him a very attractive alternative to many. I did also find, however, that there has been a review into him, and that there are also people who dislike him as strongly as I and many others dislike Dr Weasel. Personally, I don't feel that I have found out enough about him to recommend him for knighthood myself. But I would certainly say 'yes' he's a good alternative to ... you know who ... and that if you wish to recommend someone to be in direct opposition, then Professor Hooper is probably the right person for the job.

I, myself, think I will stick to recommending a certain journalist. I have a feeling she might turn down the post if she was offered it. That, however, would be as worth seeing, as seeing her receive it!

So, how do we go about recommending someone for a Knighthood? It's actually very simple.

There is a choice of format in which you can download the form. I would suggest PDF, as most computers have a PDF reader. You then print the form out, fill it in, and post it off to the address on the website. Couldn't be simpler, could it? Well yes, since the form is rather long and complicated. 

... and sitting on my desk still waiting to be filled in.

Tuesday, 1 January 2013

No Knighthood!

"We the undersigned wish to make it known that we believe the award of a knighthood to the internationally maverick and outspoken psychiatrist Simon Wessely, whose views on several serious illnesses are seen to be patently wrong, and are widely abhorred by the experienced patients he purports to want to help, brings the whole honours system into disrepute, and should be withdrawn before the progress of real science, makes finally clear to all, the folly of his particular and peculiar sickness beliefs."

I have mixed feelings on this petition. I've not signed it, and I'm not going to.

I do not like Simon Wessely anymore than the next person with M.E.. I do not like his views, I don't like his trials, I don't like the way in which he's manipulated the medias view on our illness, and I do not like the way in which he's labelled himself as a victim because he's been criticised. Every scientist receives criticism; I've never heard of any of them claiming victimisation because of it though. Wessely is a nasty piece of work whose first priority is his reputation, and second priority is protecting his research. His patients don't even factor.

So when I see that he is nominated for a knighthood I am not happy. Not impressed. It shouldn't have happened. As it happens I actually like our Queen. She gives off good vibes. It's not her fault that she was born into monarchy. I certainly don't support the abolition of the monarchy. I feel very sorry for her that she has to be in the same room with The Weasel though. I would like to think that there was some chance of her doing the research behind knighthoods, but in reality someone else will do that. No doubt it Simon minions who nominated him. It certainly wouldn't have been any legitimate M.E. doctor, or an M.E. patient.

But I can't make myself sign it. Professor Wessley has gone out of his way to label people with M.E. as being crazy. He hasn't merely claimed that M.E. is a mental illness, but because people object they are crazy. He's over-exaggerated the number of people who complain, and the manner in which they complain. He overplays his hand. He knows he has more power than any of us will ever have. It must be fun to kick people when they're down.

I do not want my name associated with this petition. I don't want to be among those he sees as victimising him. I don't wish to give him that pleasure. He doesn't know me from Adam of course.

The fact that the petition is worded badly is besides the point. I could pick it apart easily, making it clear why it would never get anywhere, legally, but that isn't my point, unusually. The point is that the truth will out eventually. Wessely will be seen, by history, as a very nasty man. He'll be seen as someone who deliberately prevented very sick people from being treated. With any luck biomedical research will show this within our lifetimes, and have him called up on it. But again, not my point.

My point? What is a knighthood? These days it doesn't actually mean anything. It's an ego boost for him. It will mark him in history. And because of who he is, he will be remembered as being a creep. That isn't what he has aimed for, obviously, so by being knighted I feel he's stabbing himself in the foot really.