Thursday 28 July 2011

Mostly yesterday 28-07-11

I got up early today (10:30am is early for me). I tried to stay in bed resting, but I couldn't even persuade myself to read. My mind is actually lucid for a change too. I wish I could think of a use to which to put it. The only thing that comes to mind really is that I did not blog yesterday. I should have, as although it was a particularly tedious day, it was the original purpose of this blog to record such tedium.

So, yesterday ...

I was awoken at just gone 10am by the cat. She was telling me in no uncertain terms that it was breakfast time. So I rolled over, pulled the duvet over my head and went back to sleep for another hour. I did come downstairs to feed her eventually. I discovered in doing so that every single bit of me ached. I guess I should not have been surprised by this really, but I was.

I think, when I went for a walk in the fields opposite G's house the previous day, I somehow hurt my back. I made no particular sudden movements that I'm aware of, fell down no rabbit holes. I did have a nap in the middle of a field. But nothing of note; yet I very obviously now have sciatica.

Not only was I struggling with sciatica yesterday, but I also had the pain I refer to as 'FM style pain' throughout my legs and arms, for the first time since Tim (my osteopath and acupuncturist) poked me with lots of needles. Soooo, sciatica and muscle pain; two reasons to see Tim again I guess. It's a shame I cannot afford to do so at the moment, and probably won't be able to until the house sells.

Anyway, to top off the deal, yesterday my period decided to start. This will of course explain my observation about emotion from the previous day. It's been a while since I had period pain as extreme as it was yesterday. The only means I've actually had of coping with period pain for years is to knock myself out with pain killers (they send me to sleep rather than actually dull the pain), and sleep through the nightmare. Last month my doctor gave me some actual prescription pain killers. I tried these yesterday. They did not send me to sleep (yay), but they also did not even touch the pain (not so yay). I'll have to go back to my doctor and grovel.

I am uncertain of why, but frequently I notice that when I have my period I seem to become more lucid. I took advantage of this yesterday by starting to build my family tree through G's ancestry.co.uk account. I've had it written down for years; it's a huge thrill to see it coming together on the computer.

And so, I guess that is what I will be doing today. I seem to be particularly sound sensitive today, so the TV will definitely remain off.

Second letter from my MP

The reply to the letter I sent to my MP; you can find here:

Dear Olana,

Thank you very much for your letter, and enclosures, regarding your situation as a CFS/ME sufferer which I read with interest and concern.

You have made a number of very interesting points with regard to how the assessments for ESA are carried out and I have now referred this to the Minister concerned at the Department of Work & Pensions.

As I mentioned in my previous letter, the Minister will not be able to comment on your own, personal situation, but I have requested his comments on the concerns you have raised.

I shall, of course, contact you as soon as I receive a reply to my letter.

My thanks, again, for taking the time to write.

Your sincerely,

Your MP.

Wednesday 27 July 2011

Apt Description of CFS

I've pinched this from another blog, because it's so accurate. Click the title of this post to view that blog. The only quibbles I have with it are that it forgets the constant agony in our limbs,  I wouldn't have deleted the nausea part, and I certainly wouldn't say 12 years is the maximum .. sadly.


A LOT of people with Chronic Fatigue Syndrome struggle to describe their condition or its symptoms. I don't have that problem.

It's a relatively simple equation, it just needs a bit of imagination. Think back to the worst hangover you've ever had.

The one when you get home at 4.30am, barely able to stand and then your alarm goes off seemingly before your head even hits the pillow to tell you the hardest working day of your life is about to begin.

Now take that hangover, delete the nausea, and turn the headache down from a Spinal Tap 10 to the irritating hum of a Level 5.

As you stagger from your bed to get dressed, imagine that the top layer of your ensemble for the day is a 20kg lead blanket that you will wear like a shawl over the back of your neck, top of your shoulders and top of your back.

Now imagine yourself with no sleep, slouching under the weight of the blanket walking 10km to work, to ensure that you are completely out of energy, with a list of 40 names and 40 phone numbers that you are to memorise by the time you get there.

Fast-forward to 3pm, when you are praying to a merciful God for just five minutes of sleep as the weight of the lead blanket feels like it is collapsing your lungs, you recall about six digits from the 40 phone numbers and none of the names and your boss isn't happy about it.

You ache all over and the last three grams of your energy are being used to stop yourself from grabbing something sharp and plunging it into the chest of the 55th person who has got on your nerves that day.

Take that mental image of yourself at 3.05pm on the worst day of your life, and imagine how you feel, physically and mentally. Welcome to the wonderful world of Chronic Fatigue Syndrome.

The good news is, with CFS, you don't have to wait until 3.05pm to feel this way.

When you have it, this is how you wake up every day, whether you have had eight, nine, ten or two hours' sleep.

Everything you do in your daily life is now a major event, and takes massive amounts of effort and energy that you just don't have to give.

Summoning the energy to swing your legs over the edge of the bed and stand up? It may as well be the a Marathon.

Even holding a conversation, without your mind wandering off and your eyes glazing over to make it seem like you don't care - even when you do - takes immense concentration on every word. By the end of the chat, you are physically drained.

Even finding out you have Chronic Fatigue is exhausting.

Doctors have no way of actually testing for it, so they test for everything else first, and rule them out one by one.

You're depressed, take these drugs. You have iron deficiency, take these pills. You have a brain tumour, have this scan. You need more/less red meat, water, caffeine, exercise, stress, alcohol, sleep.

When they finally decide it's Chronic Fatigue, they tell you there is no cure and you'll just have to wait it out, anywhere between six months and 12 years.

Big Bad Al

Waiting Waiting Waiting

What the frick is wrong with me??? 27-07-11

I woke up this morning with chronic tummy pain. This did not overly surprise me since I'd had the same experience yesterday. On Sunday G and I went down the road for a carvery lunch. I had forgotten that stuffing contained gluten, and tucked in happily. The good thing is that I enjoyed every mouthful of my lunch. The bad thing ... if I'm gluten intolerant then I just undid all the healing that would have been happening over the last few weeks. *If*. I figure, anyone who hasn't eaten gluten for weeks would probably react the same way after eating it again. We'll see at the end of the trial period.

So, I woke up, went to the bathroom, and was then so completely exhausted that I went straight back to sleep again. I woke up again a few hours later, but still felt drained, so read for a bit. Slept for a bit. Read for a bit. Slept again. Finally at just gone 3pm I felt awake and actually lucid, so I got out of bed. There was a letter waiting for me at the doctors that I was supposed to collect on Friday, so I went and collected it. I posted the corset to Nomi while I was out too.

Yesterday, Gand I had been talking about Counting Crows. I mentioned a song that he'd never heard of before. I decided to take the single with me in the car and listen to it. While I was out I had the bright idea to take the CD up to G. I thought it'd be nice to spend the evening with him. I looked at the time and realised that I'd get there a bit early. He finishes work at 5:30; I'd get there about 5.

I drove up there. Reached his place at 4:50, so decided I'd take the extra time to see what was further up the road (it heads out of the village; a direction I'd not been yet). So I drove for half an hour til the road ran out. Turned around. Headed back. It was gone 5:30 now, but he wasn't home yet. So I parked the car and went for a walk in the fields opposite his house. He texted me at just gone 6pm. I figured this meant he was leaving work. I sat on the hill overlooking his house to see when he got home. But he didn't. At 6:50 I finally phoned and asked him why he wasn't at home. He'd gone to the pub after work. He said he'd be home in half an hour. Since he'd not picked up on the fact that I was at his house I kept shtum and decided to head home instead .. forgetting that I'd already put the CD through his door.

I got home before him. He didn't notice the CD when he got home. So when he phoned me I was kind of skirting around trying to work out whether he realised I'd been there or not. I basically had to direct him to the CD. He was extremely touched that I'd driven up there, and then scolded me for not telling him I was there when I'd spoken to him at the pub. I could have gone and surprised him at the pub .. had I know where the pub was .. but I'm not exactly sparkly Nim today, and wouldn't want to meet his boss when I'm in this state.

I am very confused as to quite what is going on with me at the moment. 

First of all when I was at G's ten days ago I had all the signs of being on my period, including the weird mucous stuff (sorry for TMI), but no actual period. Whilst driving to his place this afternoon I had period pain all the way there. But not on the way back, and not this evening. 

Secondly, this whole gluten thing is tiring me out. I'm confused. I was so sure. Every time I ate something with gluten in it I was crashing immediately afterwards. Then I took a week where I eliminated gluten from my diet; I immediately started to have an appetite, all the weird cravings went away, and I stopped crashing after I ate. But since I've been on the elimination trial for longer I've started to become fatigued after eating again. G read that this can be normal, but I'm still doubting myself. And then I ate gluten at the weekend, and have very obviously reacted. And whilst I can say that anyone would probably react to it, I have to also acknowledge that I've immediately started having weird cravings and lost my appetite again. It's so confusing.

And finally, when I was walking in the fields opposite G's I went through so many different emotions. I was feeling fine. I felt like I was not ill. I felt strong, as if I had energy, I felt vibrant. And then I started thinking about how much I actually want to be with G; how I want my life to begin now, as if I've been waiting forever to be with him, and I started crying. And then I started feeling sad again, as I had been yesterday; questioning why every time I try to do something nice for myself it always goes wrong. It was as if my brain had decided to go through a role-call of emotions to check that they were all there.

Monday 25 July 2011

New Definition for M.E.

I've nicked this from a friend of mine on Facebook (thank you Rupert). I'm not lucid enough to actually be able to read and process it myself at the moment, but am hoping it'll be useful to others. It's the new definition for M.E. as taken from the ME Associations website.

"MYALGIC ENCEPHALOMYELITIS: INTERNATIONAL CONSENSUS CRITERIA Adult and Pediatric ● Clinical and Research

Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.

A patient will meet the criteria for post-exertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).

A. Post-Exertional Neuroimmune Exhaustion (PENE pen׳-e) Compulsory This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are: 1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. 2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms

3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days. 4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer. 5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

Operational Notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level), moderate (mostly housebound), severe (mostly bedridden), or very severe (totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient’s recovery time from reading for 1⁄2 hour, it will take much longer to recover from grocery shopping for 1⁄2 hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately. Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.

B. Neurological Impairments At least One Symptom from three of the following four symptom categories 1. Neurocognitive Impairments a. Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia b. Short-term memory loss: e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory

2. Pain

a. Headaches: e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches

b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain

3. Sleep Disturbance a. Disturbed sleep patterns: e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares b. Unrefreshed sleep: e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness

4. Neurosensory, Perceptual and Motor Disturbances a. Neurosensory and perceptual: e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception b. Motor: e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

Notes: Neurocognitive impairments, reported or observed, become more pronounced with fatigue.

Overload phenomena may be evident when two tasks are performed simultaneously. Abnormal reaction to light – fluctuation or reduced accommodation responses of the pupils with retention of reaction. Sleep disturbances are typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage. Motor disturbances may not be evident in mild or moderate cases but abnormal tandem gait and positive Romberg test may be observed in severe cases.

C. Immune, Gastro-intestinal & Genitourinary Impairments At least One Symptom from three of the following five symptom categories

1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.

e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation

2. Susceptibility to viral infections with prolonged recovery periods

3. Gastro-intestinal tract: e.g. nausea, abdominal pain, bloating, irritable bowel syndrome

4. Genitourinary:e.g.urinary urgency or frequency, nocturia

5. Sensitivities to food, medications, odours or chemicals

Notes: Sore throat, tender lymph nodes, and flu-like symptoms obviously are not specific to ME but their activation in reaction to exertion is abnormal. The throat may feel sore, dry and scratchy. Faucial injection and crimson crescents may be seen in the tonsillar fossae, which are an indication of immuneactivation.

D. Energy Production/Transportation Impairments: At least One Symptom

1. Cardiovascular: e.g. inability to tolerate an upright position – orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness

2. Respiratory: e.g. air hunger, laboured breathing, fatigue of chest wall muscles 3. Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities

4. Intolerance of extremes of temperature

Notes: Orthostatic intolerance may be delayed by several minutes. Patients who have orthostatic intolerance may exhibit mottling of extremities, extreme pallor or Raynaud’s Phenomenon. In the chronic phase, moons of finger nails may recede.

Paediatric Considerations

Symptoms may progress more slowly in children than in teenagers or adults. In addition to post- exertional neuroimmune exhaustion, the most prominent symptoms tend to be neurological: headaches, cognitive impairments, and sleep disturbances. 1. Headaches: Severe or chronic headaches are often debilitating. Migraine may be accompanied by a rapid drop in temperature, shaking, vomiting, diarrhoea and severe weakness. 2. Neurocognitive Impairments: Difficulty focusing eyes and reading are common. Children may become dyslexic, which may only be evident when fatigued. Slow processing of information makes it difficult to follow auditory instructions or take notes. All cognitive impairments worsen with physical or mental exertion. Young people will not be able to maintain a full school program. 3. Pain may seem erratic and migrate quickly. Joint hyper-mobility is common.

Notes: Fluctuation and severity hierarchy of numerous prominent symptoms tend to vary more rapidly and dramatically than in adults.

Classification ____ Myalgic Encephalomyelitis ____ Atypical Myalgic Encephalomyelitis: meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.

Exclusions: As in all diagnoses, exclusion of alternate explanatory diagnoses is achieved by the patient’s history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one disease but it is important that each one is identified and treated. Primary psychiatric disorders, somatoform disorder and substance abuse are excluded.

Paediatric: ‘primary’ school phobia.

Co-morbid Entities: Fibromyalgia, Myofascial Pain Syndrome, Temporomandibular Joint Syndrome, Irritable Bowel Syndrome, Interstitial Cystitis, Raynaud’s Phenomenon, Prolapsed Mitral Valve, Migraines, Allergies, Multiple Chemical Sensitivities, Hashimoto’s Thyroiditis, Sicca Syndrome, Reactive Depression. Migraine and irritable bowel syndrome may precede ME but then become associated with it. Fibromyalgia overlaps.

http://www.meassociation.org.uk/?p=7173"

Friday 22 July 2011

Taskforce

This is a facebook group that I do not intend to join as I know I will get wound up by it:


It does scare me though. The taskforce is starting less than half an hour from me. I'm not quite sure how it works. I read somewhere that it'll be targeting high risk areas first; I don't know if I'm in one.

I have no idea what they could find that would be evidence that we are capable of work. At the moment I have my printer next to the settee, with paper and envelopes in a bag, next to a folder of stuff. They may consider that to be evidence that I am doing work like activity. The fact is that the printer is down here because it hurts too much to go upstairs to use it. The reason I have been printing stuff is for evidence for the appeal process. Writing to my MP. Writing to ex bosses. Writing to my doctor. The envelopes and paper are obviously for the letters. The folder is my filing system; which contains all my correspondence with the DWP. Well .. most of it. Some of it is under my bed for some reason.

Chances are that if they came to the door I would be upstairs asleep anyway, so wouldn't hear them. They may take that as evidence that I am not home, and therefore able to work, which I do find very worrying. Do they have the right to break the door in? Do they have warrants? If they don't have warrants I can just tell them to go away anyway, I believe.

If anyone turns up here, I'll be going straight next door to Brian. No way would I face that alone.

Thursday 21 July 2011

Vindicated!!!!

If you click on the title of this post it'll take you to the following newspaper article. I'm copying it here too, because I have a sneaky suspicion that such honest publishing may well be withdrawn. A quick overview; the government should have claimed back 50 million pounds from ATOS Healthcare because they have failed so badly with the medical assessments. They have not claimed the money back. My personal feelings on this are that it is being recognised how badly ATOS are treating us; that in itself is a result. I would like the government to claim back the money and stop penalising the little people for pennies, but I have no control over that. I would also like the figures in the article to be much more widely published, though I suspect the public will not be interested to hear that we are NOT faking malingerers. Ho hum.

"BUNGLED rulings by the private firm deciding whether benefit claimants are fit to work are costing taxpayers s50million, we can reveal.

The Government have been urged to claw back millions from the contractors after they wrongly assessed thousands on disability benefits.

Atos Healthcare is being paid s100million a year by the Tories to reassess people claiming disability and sickness benefits.

But around 30,000 people appealed against their decisions, with 40 per cent of them successful, which has cost the government around s50million.

The Department for Work and Pensions' contract with Atos allows it to recoup money from the firm for poor medical advice.

But UK employment minister Chris Grayling has admitted not a single penny has been claimed back.
Quizzed by Labour's Tom Greatrex, he said Atos "have met all of their targets for medical advice".
Greatrex, MP for Rutherglen and Hamilton West, said: "The Toryled Government's failure to provide the taxpayer value for money is disgraceful and the attitude of the minister responsible for this defies belief.

"To suggest Atos has met its targets when it is needlessly costing the taxpayer millions is unacceptable. "It is astonishing that the Government did not recoup a single penny of taxpayer money from Atos, despite its obvious failings.

"At a time when the welfare budget is being slashed by billions, many people will be surprised that the government is not demanding repayment from a multimillionpound international organisation. "The Government is very quick to demand money back from welfare recipients who don't live up to their responsibilities. They should do likewise with Atos."

DWP's contract with Frenchowned Atos allows the government to "apply financial remedies" where the firm has "failed to meet contractual targets".

A dwp spokeswoman said: "If a decision is overturned at appeal, it does not necessarily mean that the original decision was inaccurate.

"Often, customers produce new evidence at their appeal."

Atos said it had nothing to add to the DWP's statement.

We revealed in March how Glasgow GP Margaret McCartney went undercover at an Atos recruitment evening.

She was told: "You are not in a typical caring role. This isn't about diagnosing. We don't call them patients. We call them claimants.""

Wednesday 20 July 2011

Optogenetics

This looks quite exciting. A friend of mine gave me this link on Facebook earlier today. It doesn't mention CFS / ME at all, but I can see where her thinking goes with this.

Click here to watch the clip.
(It's only five minutes long).

It is not something likely to happen during my life time. These sorts of research take decades to develop. Once they have developed a treatment for one condition though, I suspect others will come fairly quickly. CFS / M.E. is not going to be top of the list of priorities; the cause of it really needs to be identified correctly first. Hopefully by the time that Optogenetics is developed, the cause of M.E. will have been properly identified.

Meanwhile, I'll just keep treating my symptoms and listening to my body.

Tuesday 19 July 2011

Better Drawn

Borrowed from Better Drawn, who says:
“From a hopeful, mostly-recovered-but-fluctuating ME/CFS sufferer who occasionally stumbles headlong back into ‘the pit’. ‘The pit’ is what some mild/moderate sufferers call ‘crashed’. Severe sufferers are always in ‘the pit’ and can’t climb out. ‘But you don’t look ill’ is the one of the main dismissive statements, along with ‘everyone gets tired’, that ME/CFS sufferers hear. This image reflects what some of my ME/CFS acquaintances have experienced at some time during their illness, especially when trying to claim welfare benefits.”

Monday 18 July 2011

G moved house

I knew before I met G that he was looking to move house. In fact, we had a conversation, which in retrospect, is quite funny, a few days before we actually met for the first time. We were discussing rental properties. He was looking to move soon, and I was thinking about what will happen when this house sells. One of the properties he was looking at said 'no pets'. I said I would not even consider a house that said no pets. He responded that he wasn't inviting me to live with him. It flustered me at the time, but given that he has now invited me to live with him, I am tickled. I don't think he remembers the conversation though.

Well, a couple of months ago, he viewed a house that he fell in love with. It's a little white cottage, part of a small terrace, set back from the road. It faces fields, and is in a beautiful little village. The kind of village that aims to win 'best kept village' and has an alarming number of WI meetings. He was already invited to join the fox hunt meetings.

He took a week off from when he moved house, and invited me to spend the week with him. The intention was to help him set up the house, unpack etc. I was very nervous. At most we'd only spent about 36 hours together; spending nine days together was daunting.

I can't really remember the beginning of the week. To get to his house it's literally turn out of my village, follow the same road for an hour, and turn into his road. Fantastic. Don't even need SatNav. I think I was having a good day, coz I enjoyed driving there.

My first proper memory is the Monday. It was the only day G actually had to work that week. When he'd moved in he'd sort of just dumped the furniture, boxes, and bags everywhere. He'd shuffled the furniture around a few times over the weekend, but was undecided on what he wanted to do. We discussed on the Sunday evening a final decision regarding furniture. So come Monday, while he was at work, I set about sorting the bags and boxes into the relevant rooms, and then sorting out the living room furniture. I am absolutely gobsmacked in retrospect, at how much I did, especially given how bar I'm feeling today. I expected to crash badly the next day, but I didn't. We managed to do bits of shopping in the week, and play board games, and watch DVDs. It was only as it got towards the end of the week that I started to come down somewhat. I spent all day Saturday in bed, and wasn't exactly very well on Sunday, but managed to drive myself home. As soon as I walked back into this house I just crashed completely.

I have to say, we really didn't get much done. Apart from what I did on the Monday, I don't think we actually did anything practical in the house. I have been back again the weekend just gone, and made him a list of tasks to do this week, so we at least have progress.

I don't really understand what is happening to me. When I'm with G I feel a lot better. I hope I'm not being an energy vampire; I keep asking him if I'm tiring him out, but he says not. His new house feels so full of light, and is almost energizing. Here, I feel ... ill, sick, weak, tired, and depressed. I loved being with him last week. Oh yes ... we finally admitted to being in love.

Scared - 18-07-2011

I should have updated a week ago really. I spent a week with G after he moved into his new house, and it was absolutely fantastic. I will write about that separately though. Right now, I'm feeling scared, and I need to get it off my chest.

In April of last year, I think, I started reacting to the cat. You know how you just have the instinct that tells you what you're reacting to? Well I knew it was the cat. I was constantly sneezing, a lot more so when the cat was around, it went to my chest and started feeling fluttery, so I started living on anti histamines; one type for night and one for day. Then I went to Egypt with Ian, and was a billion times worse when I got back ... the doctor said I'd picked up a bug on my trip and that's what caused the subsequent illness that lasted until last December. I was tested for cat allergy, and it came back negative; but people who are generally not allergic to most cats are allergic to Sienna ... so presumably she has a different kind of fur / dander. I asked to be tested for allergy to my specific cat, and just received funny looks from both my GP and the immunologist.

I started noticing last week that I was reacting to the cat again. She's molting again. When she started molting a few months ago I was relieved to find that I didn't react to her. I am now. She's obviously shedding a lot of fur; as she had her first massive hairball for the first time in years, the other day.

I took a nap this afternoon. I woke up with a really badly fluttery chest. I felt worse when I woke up than when I'd gone to sleep. Dead legs. Dead arms. Nauseous and queasy. Thick headed. My eyes hurt. In short ... I'm very scared that I'm getting ill like I was last year. And this time I'm on my own. I have no idea how I would survive if I went through, on my own, what I did last year :(

Friday 1 July 2011

Draft reply to MP

I'm hoping to have more, or better content to put in this letter. I have posted my MPs offer on several M.E. groups. I was expecting to have billions of suggestions, after all everyone keeps complaining about how the system works. Not a whisper! People are so quick to complain, but never actually want to do anything about it. So, here's my reply so far. If I don't have any suggestions by the time I get back from G's (coz I'll not have internet access for the week) I'll be sending it like this:


Dear MP,

Thank you for your swift reply. I do appreciate that your records do not go back to 2003. Thank you for taking the time to look into it anyway. As it happens, since I wrote to you I have received a letter from the DWP stating that they have overturned their decision regarding the outcome of my assessment. They have now placed me in the Work Related Activity Group for Employment & Support Allowance. I still feel this decision is totally wrong, but I dare not rock the boat in case they decide to revoke any ESA at all.

I have included for you a copy of the medical assessors notes from the medical assessment I attended for ESA. It is 28 pages long, so obviously I do not expect you to read all of it. I have given you this for a few reasons. My first reason is personal. I did some reading before attending the medical assessment. I kept seeing reports from people who said that the assessor had lied in their assessment, but I did not believe it. I assumed people were exaggerating. They were not. The person who assessed me has not only completely fabricated ‘evidence’, but twisted things I said, jumped to conclusions, contradicted herself, and worst of all blanked the existence of my back problem all together. When I first read through her notes, I had a severe panic attack, completely losing awareness for twenty minutes or more. I have added annotations to the notes to show how misleading they are. I have tried to remain passive, but it is not easy to do so.  I applied for DLA soon after applying for ESA, not because I want the money, but because I really need a blue badge. DLA was declined me based upon the medical assessors report, which I was in the process of appealing. I was under the impression that DLA could not use the ESA medical assessment for evidence, as they are not assessed by the same criteria. I am disappointed, but too exhausted to appeal another decision. I understand from your letter that you cannot raise my own case with the appropriate government minister; I merely wish for you to see my own case, and understand how misleading the assessment is, and the ramifications it can have elsewhere (i.e. DLA application and my subsequent health).

My second reason is that I am a little confused over how these assessments work. I was not particularly surprised to find, when talking with other people who have CFS / M.E., that our assessments were coming out similarly. However, when speaking to someone with a completely different condition, in a different area of the country, I was alarmed to find that our medical reports are nearly word for word identical. How can that possibly be, unless medical assessors are actually told what to write on reports before they meet clients? I would be happy to gather evidence of how similar these reports are for you, if you would be interested.

Having read the guidelines on how medical assessors are taught to assess CFS, I am very disturbed. Assessors are given the choice of deciding whether CFS is a physical condition, a mental condition, or a combination of both. They are not told what it is! It is classified by the World Health Organisation as a neurological condition; that would make it a physical condition. If assessors aren’t actually told what it is, how are they supposed to assess accurately the condition?

A huge problem with these assessments is that they simply are not designed to assess fluctuating conditions. They should not even be trying to do so. CFS is a relapse remission condition. That means by definition that tick boxes cannot assess it. Obviously, in order to be able to attend a medical assessment in the first place patients have to rest, and prepare; they are only seen at their best. For myself, I can tell you that I tried to rest for two days before the assessment, but actually got no sleep the night before due to anxiety. I was so stressed by the assessment that it caused me to be bed-bound again for two weeks; which meant that I was still in a very bad condition caused by the assessment when I was phoned to tell me that I had failed the assessment. Fluctuating conditions can’t be assessed in a 30 or 40 minute interview; they would require at the very least a day with the person at the assessment centre. The problem then though is that many people with CFS cannot cope with light, or sound, or motion, so they would need a special room in which to spend that day. For this reason it surprises me that home assessments are not permitted, and that letters from the doctors who know their patients best are disregarded.

Another problem with the assessments is that if you do not attend you automatically fail. Yet you are not given a means of contacting the assessment centre to inform them that you cannot attend if you are too unwell to do so. I had this problem a few years ago.

As an aside, I think it is somewhat irresponsible of ATOS Healthcare to have the medical assessors names on the medical assessments that are sent out to patients. People hold the assessors personally responsible for the stress caused, with good reason in most cases. On one of the forums I am a member of I have seen people start to name their assessors. A simple Google search turns most of them up on Facebook or NHS websites. By including their names on the assessments these people are possibly being placed in danger. Perhaps using a reference number for the assessors would be a safer and more sensible option.

The statistics I am reading show that something like 69% of people are failing at the medical assessments. However, if I remember correctly over 40% of those are then reinstated at tribunal. There is a number somewhere in between that have the decision overturned before it reaches tribunal, like myself. And the rest are being placed on Job Seekers Allowance, where the majority of those I’ve spoken to are treated very kindly by advisors who recognise that they are too ill to work anyway. I don’t see how any of this is saving the government money. People either end up with the same amount of money (ESA start rate and JSA are the same amount), or with more money (the rates paid after a successful medical assessment is higher). If the original assessment was more accurate, then a lot less people would need to appeal; every appeal process will be costing the government money. Presumably the tribunals, having three people on the panel, rather than the one medical assessor, are a lot more expensive. The really annoying part of this, is that the only figures that find their way to the headlines are those stating that 69% of people claiming sickness and disability benefits are failing the medicals; suggesting to the general public that 70% of us are fakers. All this seems to be achieving is an unpleasant prejudice towards people whose lives are already very difficult, if not unbearable. I am not sure whether it has occurred to the government that causing people with illness more stress, will make them more ill, and therefore less likely to return to work. To go through this nightmarish process we have to put our lives on hold for months, sometimes over a year; that means putting any recovery on hold, and more often than not taking huge backwards steps because of the stress. I would like to point out that before I became ill, I was earning £15,000 per annum. At the time Incapacity Benefit was approximately £42 a week; would it really be worth my while faking an illness in order to reduce my income by £12,000?

Most people who have written letters such as these to their MPs have received a short letter in return claiming that ATOS are a responsible organisation doing a good job. I’m sorry, but as someone on the receiving end I can’t take that answer. I would like to suggest that if the government is not already doing so, they implement something similar to a Mystery Shopper, to test ATOS. Obviously it would need to be done by people who are genuinely incapacitated. I do not think it would cost the government money, as there are plenty of people who would be more than willing to volunteer.

I think, since I am on my third page to you, that will be enough to be going on with. I am not sure these are the sort of things you had in mind. Just to summarise for you:
-    Medical assessors appear to be fabricating medical assessments, which is a very worrying problem.
-    I think the guidelines on how M.E. / CFS is assessed need to be reviewed.
-    A completely different assessment design is required to assess fluctuating relapse / remission conditions.
-    People asked to attend medical assessments need to be able to contact the medical centres on the day if they are unable to attend the assessment.
-    Medical assessors names should not be on the notes sent to claimants, for their own safety.
-    The statistics are being handled irresponsibly.
-    The process is making people more ill, and causing widespread prejudice within the general public.
-    A Mystery Shopper style test of ATOS would be appreciated.

On a slightly different note, I am wondering whether you may be interested to learn about M.E & CFS yourself. If you have a couple of hours spare next time you are within the Lichfield area, I would very much like to talk with you about the condition. There is so much misunderstanding and confusion regarding it, that it would be particularly useful to have a member of parliament with an understanding.

Kind regards,

Olana Voljeti

Letter from my MP

Dear Olana Voljeti,

Thank you for your recent letter and I was sorry to learn that you are still suffering with M.E.

Unfortunately, I do not keep full paper files dating back to 2003. I only have a short record saying that we looked into benefit entitlements on your behalf. I assume, however, that you will have kept any correspondence relating to this.

Obviously, if you have not already done so, you should contact your GP to confirm your diagnosis of ME - he is the best person to help.

I would be happy to write to the appropriate Government Minister on your behalf, but you should bear in mind that he will not be able to comment or look into your specific case. If you would like to write to me with general points you wish to make on welfare reform, I will certainly pass these onto him.

I hope this helpful.

Yours sincerely,

Your local MP.


You know what, I have absolutely no idea where any of my paperwork is, coz Ian put it all somewhere when he chucked my desk out. So I really don't know where my letters from my MP, from 2003 would actually be. This obviously is not my MPs fault though.

I'm not quite sure why he thinks I need to contact my GP to confirm my diagnosis. My GP has been writing me regular sick notes with it written on it. Am I missing the point here?

As far as I'm concerned, that letter is still going in my pile of evidence as it is at the very least confirmation that I contacted him in reference to benefits in 2003. Thank you Mr MP :)