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Fighting a legal battle with very few resources

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Pie chart explained at the end.


It feels like most of this year has been taken up trying to deal with 2 very big problems that have occurred as a consequence of my Bankruptcy. Which is dealing with legal and financial “debt” actions for bills and charges relating to one of the flats I used to rent out. In Motherwell.

Both the council for the area and the factors that manage the property want me to pay for things that have arisen or been charged after I went bankrupt in Sep 2014. This is why I referred to “debt” in inverted commas – as it is debts I haven’t run up myself. And no reasonable person would expect to be liable for these – as the properties had all been handed over to a Trustee In Bankruptcy in 2014.

My Trustee In Bankruptcy (say) they have repeatedly explained my situation to these 2 organisations (particularly the factors) over the last few years – ie, I am bankrupt, went bankrupt because of health, gave all assets away on becoming Bankrupt, have no income or savings now. And can hardly manage to deal with anything because of my health. Which is WHY I opted for Bankruptcy.

Sorry, I know this is the 1000th time I‘ve mentioned this . . . . !

I have also made (been forced to make) some efforts at explaining all this myself to these organisations – usually in long emails. At great cost to my health every time, as even small exertions usually make me more ill. And can cause me to crash/relapse even further for days, weeks, etc.

Trying to think and type out an email will usually take me hours and is a very big exertion with my level of health and ability (or disability).

Again, this is why I went Bankrupt.

But these 2 particular organisations don’t care a jot about this. They seem determined to push on for their pound of flesh.

Some of this stuff I’ve probably written about in earlier posts – sorry about this. And for maybe repeating stuff.

But I desperately need to try and pour some of this out – as it is all keeping me very ill indeed. It feels like it has consumed most of this year. And it is consuming me. My physical health and my mental and emotional health too. Nightmares all the time, increasing this year – with all this worry.

Oh, and the Bankruptcy itself is still ongoing.

Still being administered.

Still dragging on.

Some other flats still to be sold.

So for me, being “discharged” from Bankruptcy in Sep 2015 has meant absolutely nothing. I have no idea what benefits there are from saying a person is discharged. Not that I expected any “benefits” as such. I just mean what is that actual point of the statement saying you are “discharged” when you were a landlord with various properties ? Because they don’t get disposed of overnight. And it is also pretty unlikely they will be disposed of within 12 months either. (By “disposed of”, I mean sold or repossessed.)

Given that one mortgage lender has taken almost 3 years to repossess an empty flat. A flat that was not tenanted, was unoccupied, ie. vacant – in Sep 2014. And well before that too I believe.

Yes, you read that correctly – 3 years . . . .

This of course, is the flat that has produced the bills I am now having to “fight” these legal and financial battles for.

I put “fight” in commas too, because I have so little ability to fight this.

As well as all the pages of physical symptoms I have with Severe ME, the awful cognitive dysfunction (AKA brain fog) prevents me being able to express myself or remember things when I most need to. Well, it causes problems for me all the time of course. Its very frustrating not to be able to remember stuff I have just read in a book, or having to re-read an email 5 times, or cannot digest something just heard on TV perhaps. It is miserable actually – but not essential in the way it will be in a court case.

The legal battle the firm of property factors are waging against me – is now in the 2nd part.

This firm (I will call them Apollo Property – not their real name) are suing me in 3 stages for factors bills, charges and “estimated” bills for communal maintenance/repairs. The total I think, adds up to somewhere between £9000 and £10000.

I think the reason they are doing it in 3 parts is so it comes under what is called the Simple Procedure in Scotland. It used to be called something like Small Claims. Either way, it is dealt with by the Sherriff Court. And I think the legal charges for the person bringing the action are cheaper than a normal court case. And the top limit for these types of cases I’m told are £5000.

So I am assuming that is why Apollo are doing it in this way.

It makes no difference to me really – as I have no funds with which to pay any of this. And would never have expected to be liable to pay these things. No reasonable person would surely ?

As I mentioned in this post, IF the flat had still been tenanted – the tenant’s rents would have been taken over by the Trustee. But I would still be liable to pay bills like these factors bills – from fresh air .

No reasonable person would expect this to be the position.

And I still don’t know for sure if this actually IS the legal position.

The previous solicitor I had requested to send or email me the specific legislation relating to this, ie. The Act and section, paragraph etc, where this is stated and detailed. So I could read it myself – as it seems so unbelievable.

He hasn’t replied.

But then he has been paid.

You have to pay the legal fees in advance and ongoing for this type of legal assistance. You do not get a bill at the end. In the way you usually do when buying or selling a property.

For this 2nd Stage – Apollo are claiming approx £5000.

For “estimated” bills for communal repairs and maintenance.

I don’t understand how it can be estimated – you would think they must know what they have paid out exactly ?

And is legal detail not meant to be accurate and specific ? I thought that the whole essence of legal stuff was the preciseness of the detail ?

So I am baffled by this.

Ironically, the whole communal area where this flat in Motherwell is located had, as I understood, been allowed to go downhill. And this was probably a result of the previous factors failing to carry out any maintenance or repairs over a period of a few years. (They eventually went into Administration and the current factors Apollo took over.) And of course, this would be why the letting agent I used said they just couldn’t get any decent tenants for the flat. And it had sat empty for quite some time before 2014.

No landlord would just choose to have a property sitting empty. Just saying . . .

At this particular scheme where my flat was – there are 3 small blocks of flats. Each with 11 flats in them.

They would all have needed similar work to mine I am pretty sure. So anything I am being charged for can be multiplied by 11 for definite. And then by 3, as 3 blocks.

Very recently it also came to light these factors Apollo are also charging the mortgage lender a sum of £16280 which they want paid to them from the sale of the flat.

(The lender finally repossessed it in March this year, and it was sold in July. )

The only detail Apollo seem to have given the bank’s solicitors is vague descriptions like “essential maintenance” and “charges”.

So that means the total of these repairs for my flat = £5000 + £16280

= £21280

And for the full block (as communal works)

X 11 flats = £234,080

And for the scheme of 3 blocks :

An absolutely whopping £702,240 . . . . !!

These figures seem astronomical.

I didn’t mean to type so much detail and make this into such a long post. But my head is spinning with all of this . . . .

And how to fight it with so little energy.

The pie chart in the picture at the top is a screen shot I took from an app called ME/CFS App. I try to record my daily energy use on it – in the hope of it helping me in the future. In doing things like tracking my level of activity to try to prevent the damaging crashes after activity. And maybe as a visual aid perhaps to show a GP of how my life is.

I’ve been doing this off and on for a few years.

The dark blue is the amount of time I am either sleeping – or completely disabled.

Possibly resting or recovering from doing stuff, but certainly unable to “do” anything at all. Not even listen to soft music, certainly not read.

Just totally non-functional.

And this is at least 80% of my life.

Probably more actually – as you fill in the areas of “activity” in 30 min boxes. Nearly everything is a high or medium energy activity for me. A low energy activity may be listening to meditation music lying down. Or maybe eating food.

A simple text message might take me 20 mins to type out – but I would probably fill a 30 mins box for this on the App. So I tend to overstate my time being active.

I imagine my actual level of functioning is around 10 % .

Which is a pretty shit life – lets be honest.

10% is the figure the App keeps telling me is my baseline. I don’t even know what “baseline” means, as haven’t had enough spare energy to read all the instructions in 2 or 3 years.

So anyway – I’m probably trying to fight this legal battle with Apollo Factors while being functional only 10% of the time.

Not to mention the firm of Debt Collectors now employed by the Council for Motherwell as well.

I don’t feel very hopeful.

But its good to vent . . . .

And if the sheer effort of typing all this gets some of this horror out of my head, and reduces the number of nights a week I have exhausting nightmares – then it has been worthwhile for me.

Sorry its such a long read.

Bankruptcy in Scotland:  The law is an ass ? 

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I enjoy writing as it can be theraputic. But this is only the 3rd post I have done this year. And it will soon be the end of June. Half the year gone.

This is because I am still horribly limited by my ME and can manage to do very little. Everything takes me ages to recover from. Maybe 90% of the time I’m sleeping, resting or recovering. Some days a bit better. And some even worse – when in bed 24 hours out of 24.

Resting or recovering isn’t much different from sleep for me. Well, apart from not having nightmares when awake. But I’m usually unable to do anything. Just pretty much non-functional. It feels like attempting anything, no matter how small, triggers off an increase in symptons. Which is miserable.

The Bankruptcy stuff is STILL ongoing. Since 2014. Shock after shock after shock. A constant battering to my health. And my husband’s health. It has been endless.

And is actually getting worse.

In my 2nd last post I had appealed for a solicitor to help. Because I was being sued by a property factor for their factors bills dating back to 2014. These bills were for their regular management charges, plus general repairs and maintenance. And of course I was very shocked at this.

The property was one of my 14 buy-to-let flats which were handed over to the Trustee In Bankruptcy in 2014. When my health totally crashed. All correspondence, bills, statements etc have been getting posted onto the Trustee every week since 2014. (By my husband as I have rarely been well enough to get out.) And the point of this was that the Trustee would deal with everything. Handle everything.

That is what I was told by the bankruptcy Adviser. That was why I was advised that bankruptcy was the best option for me, as I understood it. And why I accepted this. To “give away” the properties and all responsibility for them. I was too unwell to even think about trying to sell them myself. I wouldn’t have wanted to do this anyway at that time. I would have waited until the property values had improved. As to sell then would just have resulted in many shortfalls against the mortgages.

I know I have laboured this point before. In this post – The Bankruptcy Stuff Keeps Getting worse.

And this one – A Long Slow Road. (This is quite a long post about various things. The comments about Bankruptcy are in the 2nd section.)

And this one – Unwanted Visitors.

And this one – My Life So Far – Not What I Expected.

But it is all the more shocking to me the more that happens and the more I find out.

IF I understand correctly what has happened recently : It seems the original owner of the property (ie. me) is still liable for payment of bills like Factors bills from ONE DAY after their bankruptcy date. Up until the date the flat is either sold by the Trustee or legally taken back (ie. repossessed) by the mortgage lender. Even if this takes years and years.

In this particular case it has taken years. From 2014 until March 2017 in the case of this flat. Almost 3 years. 3 years for the mortgage lender to repossess a property which was empty. Not tenanted. And no mortgage payments getting paid on it. And its not just this flat. As I understand it – there are still 2 other flats left. Therefore it would seem I still legally own these also.

Jesus wept . . . .

Just to talk about this a bit further.

As I understand it – all rents that were paid by tenants are taken by the Trustee. Even if any had been paid to me by the letting agents – the Trustee still gets them. As bank accounts get frozen.

But I am still meant to (legally) pay all these bills. I mean, seriously . . . . ? And how am I meant to do this ? Or any other ex-landlord in the same situation.

To give a more extreme (but simple) example :

If a bankrupt landlord owned 100 flats. And they were all tenanted. All these rents would be taken by the Trustee In Bankruptcy. And if the Trustee doesn’t sell the flats themselves and the mortgage lender takes 3 years to actually repossess them – the bankrupt ex-landlord is still liable for all these bills. So the Trustee would get 3600 rents (monthly rents for 3 years). But the landlord would still be legally liable to pay 3600 factors bills (if the factors bill monthly). Does he/she magic the money to pay these out of thin air ?

IF this is the law – then the law really is an ass. (I’m in Scotland. I don’t know if it is the same in England.) I can still hardly believe it. It seems so unreasonable.

I have requested my solicitor to email me the details of where this is wtitten in the bankruptcy legislation. ie. The name of the Act and location (section, paragraph, whatever) of where this be found. Not that I really know what I’ll do with this once I have it. But I need to be able to actually see it for myself. It just seems too unbelievable.

Another point is : If any flats have been empty (not tenanted) a while – it gets even worse. As council tax bills build up too after exemption periods have been exhausted.

This then implies that utility bills for any empty flats, or empty periods, are my responsibility too. Where the supplier applies a standing charge.

This particular flat had been empty for quite a while before it was given to the Trustee in 2014. Possibly a year, but maybe longer. This was because the letting agent could not get any tenants for it. As I think the communal areas had deteriorated and fallen into a poor condition. This was because the previous firm of property Factors (who eventually went bankrupt themselves) failed to deal with any repairs or maintenance.

The irony of this is not lost on me . . .

Now I do realise (or assume) that when most people go Bankrupt they do not have a choice. Because finances and debts have got to such a position where there is just no way to rescue things.

But my situation was different.

As mentioned in previous posts – our assets well exceeded the debts. But voluntary Bankruptcy was taken purely because the Bankruptcy Adviser clearly said that the Trustee would deal with everything. Take everything off my hands. All mail, demands, forthcoming threats (once things stopped getting paid), phone calls, etc, just had to be passed onto the Trustee. (And we knew we had to pay a big price for this financially and emotionally. The loss of our home of 15 years and all the equity in it. It was no easy option or get-out.)

At the time of getting the bankruptcy advice nothing was in arrears. Everything was getting paid and there had been no missed payments. I was even still getting 0% credit card offers thru. My credit score (with Experian) had been 999 (the highest in the Excellent range) for a long time. Although it had dropped down a level by early 2014 – to the Very Good range I think. I suspect because the amount of capital debt was rising, even though nothing was in arrears. It was getting harder though – but that was more because of my health. This previous post from Feb 2013 gives an example.

I know they say ignorance of the law is no excuse. And it seems to be no defence either. But seriously – would anyone reasonably expect this to be the case? Even my administrator at the Trustee said she would dispute the claim because it wasn’t my fault all those factors bills had built up. Plus the fact that I have no income or savings with which to pay, or even make a payment arrangement. (This wasn’t legal advice of course. She told me the Trustee do not have any in-house solicitors that could advise me.)

To add insult to injury – I have no way of knowing if any of the work billed for by these Factors has actually been done. Plus – I don’t even have the bills I am being forced to pay. They were all sent onto the Trustee over the last 3 years. (Everything has been sent onto them. It is what we were told to do.) Then everything regarding the Factors claim was sent to the solicitor.

Words cannot describe how unjust this whole situation feels.

Now this same firm of Factors have started more court proceedings for “planned maintenance” bills. The next one is for £4900.00 and has been allocated a claim number for court. And they have stated they will be further suing for yet another amount for “planned and ongoing maintenance” – this time for a sum below £2000.00 .

In addition, the council for the Motherwell area where this flat is (North Lanarkshire Council) have now sent me a demand for almost £2600.00 for council tax. It was delivered by sherriff officers acting for the council. I sent it to the Trustee right away. As they are still administering my Bankruptcy. They have now sent it back to me and suggested I ask the solicitor about it.

We cannot afford to pay for any more legal help. Husband has been working 7 days a week for a while now to be able to pay for the recent legal fees. And towards repaying the friend who very kindly gave us a cheque to settle the factors demand.

Neither of us would be able to obain any loans now as our credit records will be utterly trashed as a consequence of the bankruptcy. And hubby working 7 days a week is hard – given that I can hardly do anything around the house. And he does almost everything.

Just a week or two ago he had the lovely task of emptying plastic jugs I was reduced to using in the bedroom for toileting – as I was too ill to manage to the bathroom. Too much info I know, but this is how poor my health and energy has been. And scrunching up A4 envelopes so I could use them to breathe into (like a paper bag) when I felt panic attacks coming on.

How much more can he be expected to do?

And how much more battering can my health take ? Or husband’s.

Trying to communicate with the solicitor over the last few months has taken a massive amount out of me. If I was well enough to do this sort of thing I wouldn’t have needed to consider voluntary bankruptcy in the first place.

It was made harder for me as I don’t think they could understand how bad ME actually is, especially when symptoms are severe. For example : how do you sucessfully communicate how bad your brain fog (aka cognitive dysfunction) is – when this is one of my worst symptoms?

Sometines I wondered if they actually thought I was exagerrating about how limited I am. And how long it takes me to “recover” from the exertion involved in a simple thing like an email or a phone conversation. A simple thing to them but a very exhausting thing for me. Always triggering a big worsening of ME symptoms and being more ill for days on end. And I found myself trying to explain over and over how badly limited I am. Then giving examples. Not because I was looking for sympathy or anything. But because all this legal and court stuff have time limits set. And I was terrified of what would happen if I couldn’t do things in time. This was so exhausting and I had been hoping for some reassurance that some accommodations could be made if needed.

I don’t know what to do now.

I’m really not well enough to use the internet to look for ideas. Or make longish phone calls. I don’t mean these things are impossible 100% of the time. But I can only manage a very short time doing things without it making me more ill. Then I’m knocked out for days. And I get nothing done.

I can’t think straight about any of this.

The only thing I do know for sure – is that bankruptcy has been a terrible option in my situation. 3 years of Hell for nothing. Worse than nothing. As the worsening of my health and the loss of most of my life for these years.

Any suggestions would be welcome. (About the forthcoming claims.) Any info that might be helpful would be great, eg. phone numbers, websites, email addresses.

Thanks for reading.

PS. I haven’t put the links in yet – where I’ve mentioned previous posts. Will add soon.

Crashing badly now . . . and scared 

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Trying to put this post on my blog in a hurry.

As I can feel myself crashing badly. And I’m fearful I won’t be able to communicate at all with anyone for a while. Not that I do communicate with people very much. Apart from my husband, I don’t think I have seen or spoken to anyone for months. But I do manage to keep in touch with a couple of friends by text message. Even this is hard for me with so many ME symptoms to contend with. Finding it painful to tolerate the brightness of a mobile phone screen is just one difficult symptom.

For the last while – maybe almost 2 months now – I’ve been pushing myself regularly way beyond what I can safely do. Which is frustratingly very little anyway. I haven’t had any choice in this – see last blog post for details.

A combination of lots of emails and maybe 3 quite long legal phone calls has finished me off. Every email or phone conversation I only “managed” by somehow summoning up a huge amount of adrenaline (God knows where from). Because of the importance of the communications. And every time I crashed very badly afterwards.

Every time the crashes have felt worse. More symptoms, worse severity. But I had to keep pushing against this – because of the situation.

I feel so angry about this whole situation. All of the last 3 years. And now this legal fight – to cap it all.

But I can’t do anymore just now.

I feel as though this last 2 months extra-big surge of stress, exertion, confusion, worry, etc has caused one crash too many. Too many extreme type symptoms have started again, or feel worse, eg. can’t tolerate much light at all, or sound, or movement/vibration near me. All the usual symptoms are worse.

Trying to type this thru severe headaches and the agonising brightness of the screen is really really hard. And my brain feels like its plugged into electricity. I feel so horribly wired and over stimulated. Thoughts of the last 3 years of Hell all racing round my head.

I have had to spend a lot of 2017 so far in bed. Not all of it – but far too much of it. It is a rubbish life. Although there are many people with ME who are much worse than me. I know this. And I usually try to focus on being grateful that I’m not even worse. I read about one young girl who wasn’t able to sit up in her bed for 9 years. 9 YEARS . . . . not weeks or months. And people who have lost the ability to speak. Or swallow food.

And I’m quite frightened now that I could deteriorate even further.

The last 2 months have been too much. Its as simple as that.

I need to rest completely. Even if this means bowing out of any communications with the outside world for a while. And avoiding any stimulation. Or thinking.

Just breathe . . . .

These headaches are driving me mad

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image

Today Sunday – I don’t know whether to cry because of these headaches.  Or scream with frustration.
I haven‘t been outside in the fresh air for more than 3 weeks now. Not even for 5 minutes, or even one minute.
Today is a lovely bright sunny afternoon. I can see lots of golden autumn leaves lying on the street below. A warm coating. And trees with different shades of green.

It’s as if nature is saying to me – Anne, please come outside and breathe me in.

And today my physical energy didn’t seem too bad. I was up,  washed,  dressed and have eaten.  Just a banana and toast and tea. And water.

And I was determined to get out.
I so badly wanted to get out.

But these headaches . . .

I’ve been complaining of them for a very long time I know.
But I haven’t successfully managed to get any medical help. In fact some of my attempts to seek help have just resulted in them being made worse. And my other symptoms escalating. (Have written about this before of course.)

The thing that should eventually help lessen the headaches a bit – is to just lie down. On the bed, or in bed.
And may have to put on eye patches. Or just pull down the blinds.
And have no stimulation at all.

Doing this (lying down) tends to ease various symptoms a bit – not just the headaches. eg, neck pain, being out of breath,  chest tightness, etc.
To mention just a few.

But I spend so much time lying down.
So much of my life.

As its never just 10 mins, or 30 mins that’s needed. More like a few hours. Sometimes three, sometimes six.
Sometimes a whole day.

Last night I had headaches that lasted for 5 hours – after taking painkillers.
But I was able to stay up during all of this time. Even though I couldn’t actually do very much.
Well – I watched Day Of The Jackal. The whole film. One of my favourite films.
And I was quite pleased with that.

But this is worse today.

And I just needed to have a moan.

Today I had the physical energy to be able to go down the stairs and get out.
But simply any movement at all is making the headaches worse. And this has stopped me.   And changing from looking at a close-up item to something further away makes it worse too. (This is a very recent change or difficulty.)
Yes, I do probably need new glasses now too. 
That’s another challenge to think about . . .

A friend told me that Specsavers at Morrisons (the supermarkets) actually do home eye tests.
So I have emailed them to ask if I can have one.

Will see how that goes.

Media nonsense about ME and exercise

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This article has been re-blogged from the Blog http://www.uttingwolffspouts.com which is written by Claudia Gillberg and Geoffrey Jones.  I had to reblog this as it concerns a very important subject that has often been misunderstood concerning the impact of exercise on people with ME or CFS.  The dreadful article on the front page of a major newspaper this week prompted a justifiable outcry from many sufferers of this illness. And it was no wonder – our lives are hard enough without having to contend with this rubbish. The Telegraph article is here http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html  (if anyone wants to read it).

The blogpost speaks for itself – and I love the title :

” THE SCIENTIFICALLY CHALLENGED UK MEDIA STRIKES BACK “

” When I first heard The Telegraph had featured an article concerning a follow-up study of the notorious PACE trial I was inclined to ignore it1. I’ve long become used to the appalling coverage of ME by the British media2 and felt I didn’t need to read any more disinformation disseminated via the Science Media Centre. However, I cracked and had the misfortune to read an article written by Sarah Knapton that is the worst I have seen in the thirty years I have been ill with this disease, which considering the competition is an impressive achievement1.

The article clearly implies ME is a non-illness, the suggestion in the headline that a bit of positivity and exercise could cure sufferers merits no other interpretation. One wonders what spin was put on the latest study by the SMC, as the results of this research bear no similarity to its reporting in the press. Indeed, flawed as the PACE trial is, at no point do the researchers suggest GET or CBT cure ME, as claimed by Ms Knapton in her inaccurate and mendacious article1.

Most in the ME community are aware of the substantial problems with the PACE study, including the selection criteria, the self-reporting and lack of objective measures, a flawed methodology, which have been outlined in detail by various authors including Angela Kennedy, Professor Malcolm Hooper, Tom Kindlon, Jane Colby, the late Dr Elizabeth Dowsett and, most recently, David Tuller in the US. Unfortunately the UK media continues its obsession with treating ME as a non-illness affecting lazy people whose only problem is their inability to pull themselves together and push through their fatigue, which seems to be the only symptom the media acknowledge.

To start Knapton states:

‘Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found’1.

Not a single word in that opening paragraph is accurate. The study included a large number of participants who probably did not have ME as the primary criteria for participating was fatigue. Despite this the PACE trial was only able to establish that some participants showed mild improvement while undergoing GET and CBT (though these were self-reported, subjective results). Participants remained ill and severely limited in their ability to perform normal daily activities.  To repeat, any positive results revealed by the trial were barely notable yet according to Knapton,

‘The new study found that graded exercise therapy (GET), in which sufferers gradually increase activity levels, as well as cognitive behavioural therapy (CBT), which encourages positive thinking and behaviour, had a dramatic impact’1.

A definition of dramatic: sudden and striking, impressive3

The PACE trial in no way justifies such an adjective, a more accurate description would be, ‘a negligible impact’ though this would not have supported the slant of Knapton’s piece.

Her next paragraph aggravates matters,

‘The finding is important because many CFS sufferers believe that exercise will make their condition worse.’1

Sufferers do not believe, ME is not a religion (the proponents of the psychosocial model and their media acolytes exhibit cult-like behaviour but that’s a separate issue). ME sufferers know exercise can make their condition worse through first hand experience of the damage it can cause, something supported by scientific studies illustrating physiological damage(4,5).

Two more paragraphs in the article were particularly disturbing:

‘But gradually increasing exercise and therapy to remove patients’ negative thoughts that they would never get better seemed to work. Prof Sharpe said the study was likely to prove controversial because a “minority” believe that CFS is either caused by a virus or is chronic and cannot be alleviated.’1

In what other chronic illness would sufferers be accused of contributing to their illness due to their ‘negative thoughts’? A more clear case of blaming the patient is hard to imagine and to make such a statement with zero evidence to support it, is unworthy of an academic. Suggesting that only a minority believe a virus triggers the disease and that it is chronic is not only untrue, there has never been any suggestion that ME is an acute condition, but a use of language designed to offend ME sufferers. The following paragraph continues in the same vein,

Prof Sharpe added: “It’s wrong to say people don’t want to get better, but they get locked into a pattern and their life constricts around what they can do. If you live within your limits that becomes a self-fulfilling prophesy.”1

There is no science to substantiate anything the professor states in this sentence and I can think of no other illness in which a researcher would speak of sufferers in such a fashion, it is immoral, breaches the Hippocratic Oath and constitutes abuse of a vulnerable group of patients.

Another point to make, highlighted by John Cohen in Science6, is that the basis of the original trial’s supposed success has been undermined by this latest study. The PACE trial claim that GET and CBT were the best treatments for ME is demolished by the finding in this latest study, which revealed that all therapy options produced the same results. To quote John Cohen,

After analyzing the responses, the researchers concluded that the benefits reported in the original study, which assessed participants at 1 year, were maintained for at least another 1.5 years. But the participants randomized to receive the two interventions that initially did nothing also improved, and there “was little evidence of differences in outcomes” when compared with the people in the other treatment groups’5.

Sharpe et al try to explain this by claiming that participants undergoing other therapies switched to GET and CBT in the intervening period but there is no evidence to support this conclusion. I’d also like to query what condition participants are in now, as the suggestion that any improvement was maintained for ‘at least another 1.5 years’ implies their health could have declined after this period of time.

Knapton’s article provides a list of ME symptoms, which exclude post-exertional malaise (PEM) arguably the defining symptom of the illness. It also includes a link to a video featuring Martine McCutcheon talking about the lightning process, telling you all you need to know about the malicious intent behind this article.

‘These are not magic cures’ says Sharpe. Apparently Sarah Knapton disagrees.

A final comment from Professor Sharpe:

‘It’s sometimes quite hard to understand what motivates the very vocal minority that gets upset by this apparently benign bit of moderately helpful treatment’1.

Perhaps some of the headlines in the British media this morning will enlighten the good professor as to why so many in the ME community are upset by his ‘treatment’.

1) http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html?utm_campaign=Echobox&utm_medium=Social&utm_source=Twitter#link_time=1446019914 (Accessed 28/10/2015)

2) http://uttingwolffspouts.com/2015/02/14/chronically-fatigued-the-uk-media-and-the-recently-released-iom-report/

3) http://www.oxforddictionaries.com/definition/english/dramatic (Accessed 28/10/2015)

4) http://www.ncbi.nlm.nih.gov/pubmed/23813081 (Accessed 28/10/2015)

5) http://www.ncbi.nlm.nih.gov/pubmed/25990639 (Accessed 28/10/2015)

6) http://news.sciencemag.org/health/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study (Accessed 28/10/2015)

Difficulties keeping in touch and feeling isolated

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I’m feeling a bit down this week at how difficult things are.

My main way of keeping in contact with people has usually been with text message. This is often a struggle too, but at least it was an option on days when I was able to do it.

But now I feel this has been taken away from me.

I just can’t bear to switch my mobile on and see missed calls, text alerts about the missed calls, and voicemails. From people (eg. mortgage lenders) about the bankruptcy stuff. They usually refuse to acknowledge I am Bankrupt. 
Because all this stuff has been going on such a long time – my automatic stress reaction is quite severe now. I talked about this in a previous post.
The last time I put my mobile on it showed I had accumulated 20 voicemail messages. Over a few days. And I ended up having to listen to them – I couldn’t stop myself. And of course I ended up totally debilitated afterwards by headaches.

And another whole day was wiped out because of it.

Another big problem is my hyper-sensitivity to things like my laptop or tablet – this often makes it torture to use email. I can manage it some of the time, just not very often. And even that’s assuming my brain fog will allow me to think out an email.

Phone calls are often too difficult – for lots of reasons.
So many reasons.
Other ME sufferers will know exactly what I mean, especially if they have had severe symptoms.  I don’t have enough energy to explain it here just now. I’m sure I’ve mentioned this before – somewhere. If I can find it later I will add a link.

So the only thing left is sending letters or cards.
Which is a nice thing to do – really nice actually. And lovely to receive.
But it takes a lot of energy too.  And not always ideal. Eg. I may just want to text hubby to buy me some more painkillers on his way home.
Plus, when my supply of cards runs out – I can’t just easily order more and have them delivered.
Especially if I feel I cannot open the bloody door . . .

I’m so frustrated at how much these neurological type symptoms (headaches, brain fog, hyper-sensitivity, heightened stress response, etc) are severely limiting my life day to day. On top of everything else.
And even more frustrated that the Trustee In Bankruptcy cannot seem to do anything about many of the unwanted phone calls. Or visits.

I thought about getting another (very basic) phone of course. Maybe just for texts.
But with my levels of exhaustion, brain fog, headaches, etc etc – this is beyond me at the moment. And the delivery wouldn’t work anyway.

Not being able to open my door to anyone (on a good day when I’m up and about) is rubbish.
At least Asda or Tesco deliveries can be booked for an evening delivery when it should be “safe” to answer the door. Thank God for that !
But most other things can’t.

But it’s just life I guess.
We have to take the bad as well as the good. That may sound philosophical and accepting. But I don’t actually feel philosophical or accepting in any way at all right now.

The thing is – we all need connection and contact with other people. 

The physical ME symptoms I struggle with already drastically reduce my contact with friends, and the outside world.
And for this to be made even more difficult now, thru no fault of my own, is hard to deal with some weeks.

Hence why I’m writing this post – to get it out.

Final note :

I have an Eckhart Tolle app on my mobile. Which has lots of calming and accepting and philosophical statements on it.
A good idea I thought.
A positive action.
Trying to help myself.
Will help me stay strong.
Try to focus on bring grateful that things aren’t even worse.
But have you spotted the obvious problem ?

I cannot switch on my fucking mobile because of all the shit going on . . . .

Apologies for the F word.

” Bullies ” comment and The Lancet

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There was a bit of a row on Twitter yesterday. And reading it (which I could not help) left me feeling angry and upset.
I will probably exhaust myself writing about it here – but it is too important not to.

It involved an editor from The Lancet making some astonishing comments to ME/CFS sufferers. Then actually blocking some people on twitter – so that they could no longer interact with her and The Lancet. Or be able to read anything she was writing about them, or any other health stuff.

The comment which jumped out at me involved an accusation of bullying. Followed up by a 2nd tweet showing she had no knowledge or understanding about ME/CFS at all.
If I have understood things right, her comments were initially in response to an ME sufferer pointing out inaccuracies in a piece that had been published in The Lancet. And commenting that another publication/magazine/journal had apologised for something – I,m assuming similar inaccuracies.

The 2 actual tweets were :

1st )
” What exactly would we be apologising for?? For having a view? Ridiculous.
You,re bullies ! ”

2nd )
” Chronic Fatigue = polarised field ! We,re entitled to our view as anyone else. Its an editorial !!
Write a letter if you,re that aggrieved ! ”

Gosh.
I mean, where do you start  . . . . ?

I could write so much, but simply don,t have enough energy. So I will just need to make my comments in shortish bullet points.

1) This Lancet editor has less than 1000 followers on twitter – but The Lancet itself has 164,000 twitter followers.

2) People with ME/CFS have a very serious, debilitating condition. In some cases people who have Very Severe ME have to be tube-fed as they are too weak  even to swallow.
Even the most mildly affected often struggle with simple daily activities. That the rest of the world take for granted.

3) We are hardly in a position to be bullies, are we ?
I thought bullying was about having power and control. In this situation – who has this ?
I don,t think it is an ME sufferer or the ME community.

4) Another ME sufferer tweeted :

” Jaw dropping response to chronically ill #MEcfs patients. Many cannot write an email ”

And there were many many other upset, outraged comments too.
Not surprisingly.

5) The ” write a letter . . ” comment really upset me too.

I have a multitude of symptoms to struggle with most days – just like thousands of other sufferers. The “brain fog” symptom has been pretty severe over the last few years in particular. Making writing an email or a letter a very difficult, time consuming and energy-draining task for me a lot of the time. It is difficult physically and also mentally.
I know I have written on this blog over the last few years about how much I was struggling with this. How an email that should take maybe 20 mins would take me 4 hours. And I would pay for it by being wiped out sometimes all the rest of that day. And the next day too sometimes.
etc etc etc . . . .
(A letter can be even harder if you don,t have somebody to post if for you.)
This was the reason I had accumulated such a huge backlog of work, and my business was spiralling out of control.
ie. That I couldn,t even manage to do simple admin tasks most of the time.

And the repercussions of this for me have hit me very hard.
Voluntary Bankruptcy, and the loss of almost everything – now in my 50,s.

So I did feel enraged at a health editor from a powerful health publication making such comments.

Over and out for now.

The Secret Files – more info

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I have reaslised that I must add some info here on how to actually obtain these files – as have had a few requests.

As I mentioned in the main post :
All the work in obtaining these files, and with as much info as possible re-instated into them, is all down to the hard work of Valerie Eliot Smith. Or @SnakeTempleGirl on Twitter.

Her Blog is at : http://www.valerieeliotsmith.com

Her post about these files gives the info needed to obtain them online. It is quite easy to do if a bit slow, and is free of charge.
The files aren’t secret as such anymore – but hadn’t exactly been made very public either. Plus a lot of info contained had been removed (or redacted) and it is because of Valerie’s hard work that most of this got re-instated into the files.

Hope this is of help to anyone wanting to view them.

I hope to read them very soon – but realistically will probably not be until the weekend. I think I will need to be relaxed, calm and collected – well before I start reading anyway . . . !

The Secret CFS/ME Files

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The Secret ME/CFS Files
File No : FD/23/4553 from the Medical Research Council (MRC)

This week or weekend I am planning to settle down and read this file. Probably with a cup of tea – although given the contents a large gin & tonic might be better.
To explain – this will be no pleasant read and have no doubt it will make me very angry. But there is no question at all that I am going to read it.
All 158 pages of it.

This is a file from the Medical Research Council (MRC) on CFS/ME. It had been filed away in the UK National Archives in 1997. And wasn’t due to be released until 2071.
The contents seemingly go back as far as 20 years.
NB. The lady who has obviously done a massive amount of work bringing this to the public attention is :

Valerie Eliot Smith ( @SnakeTempleGirl on Twitter )

She is a long-term sufferer of ME/CFS and describes herself in her twitter profile as an “angry bird”. And how well I understand that anger. It is the Number 1 reason I started this Blog.

Why am I angry ?

1) Because of the poor treatment I have had from GPs since maybe the late 1980s. So far back it is hard to be sure now. Not angry at the fact that I wasn’t cured – but more the way I have been treated all these years. With contempt, bullying, disbelief (obvious but unspoken), no respect, disinterest, irritation, silence, blank looks, etc etc etc.
Left to rot would basically sum it up.
Take anti-depressants and get on with it.

NB. I should add here that 2 of the 3 GPs I have seen over the years I’m sure are nice people & good GPs when it comes to other problems/conditions – ie. not CFS or ME related. (In fact they have been quite nice with a few other things over the years.) The contempt and bullying I mention was from the 1st one and goes back a long time now.

2) Secondly because of the way people with CFS or ME are often treated by the general public.
This can include employers, work colleagues, acquaintances, relatives – and unfortunately sometimes even friends and family. We are desperate to talk about it to people important to us – not because we want sympathy or attention. But because we want them to understand how bad this condition/illness can be and how much it limits us at times. All we want is understanding and hopefully some allowances made for us – so that the friendship can continue even when we are limited.
But sadly, sufferers sometimes experience boredom, impatience, no empathy or understanding at all, intolerance, disbelief and unpleasantness.
Plus many marriages have broken down, with partners leaving. I read somewhere it was estimated 50% of marriages break down when one partner has CFS or ME. I wasn’t shocked – only surprised it wasn’t more. The stress and strain can be terrible, intolerable even, on both people. Especially over the long term.
My own marriage almost didn’t survive and came very close to breaking down in January this year. After being together since 1991. Many reasons. But I would say most caused by me having CFS such a long time. Directly and indirectly.
The sheer stress of everything over so many years, without any help (for either of us) almost finished us off. We are still struggling. Not so much with our marriage but with almost everything else in our life ! It has been very hard indeed the last few years. But, after a 9 month spell apart, we are now living together again.

NB. How does this relate to these medical files you may be wondering ?
Well although there is really no excuse for people treating us poorly – I am sure the attitude of the medical profession ( ie. the experts) has not helped things one bit.

3) The sheer injustice of it all.
Being made to feel I was lazy or work-shy by the medical profession. And sometimes others. Always indirectly of course. Never stated outright – therefore denying me the opportunity to challenge it and put the record straight.
I worked full-time from 1977 until 1999, then part-time 1999 – 2003. And studied hard to get professional qualifications in Insurance and in Financial Services : A.C.I.I and M.L.I.A (Dip) and FPC (Financial Planning Certificate).
In the early 1980’s I worked in numerous 2nd jobs in pubs 3 or 4 nights a week – on top of my full-time job. This was to save up the deposit to buy my 1st flat (and cover all the costs, furniture, fees, etc). I was in my early 20s at the time and most of my friends were enjoying going out, socialising, etc. But I wanted to do this and just focussed on it. It wasn’t easy and I did it over a period of a few years. Until around 1986.
Then to be treated as lazy, or basically “worthless” by the medical profession – how could I fail to be angry ?
The lack of almost any medical help, or any type of help. No “Care Pathways” or “Management Guidance” offered to me at all. And being told that I wouldn’t get any financial help from the State as I would not qualify with CFS. My GP did not help me at all. In fact I think the only time my previous GP agreed to sign me off work (for 3 or 4 weeks) was when both my Mum and Dad were seriously ill in hospital at the same time. My Dad was in hospital for a month and had a lot of health problems. Then my Mum had a heart attack at the same time – and ended in in the same hospital (Glasgow Royal Infirmary) for 2 weeks.
So I maybe shouldn’t complain too much . . . Allowed time off work for 4 weeks. This was maybe 1987.
In late 2002/03 my GP then did sign me off work, and eventually diagnosed my CFS. My Mum was terminally ill at that time, and I was struggling very much even before that.
But in order to get this (signed off work I mean for a few weeks ) – my husband actually had to come to the Doctors Surgery with me. To help me talk to her.

NB. I want to make 2 important points here :

a) I am not angry because I wanted to have lots of time off work. Then give it up forever and live on State Benefits! But it would have helped me so much if I had been treated seriously and shown some respect by GPs. Because I am certain that if people are forced into struggling on for a long period of years (as I was) then the illness/condition becomes more ingrained. And so much more difficult to get rid of.

b) With regard to state financial help – I wouldn’t have wanted, asked or chosen to live on benefits. But I fully understand that many have to do so because they have no choice, and are own their own. But to have received some financial help would have been good. I mean people get child benefit (previously totally un-means tested). And having children is a choice – having CFS or ME isn’t.

4) Now a Landlady – since 2004.
This is hard too and is eating up most of my life just now. Because my CFS has got worse over the last few years. So makes it harder than it should be.
I “got into Property” in 2004 as was no longer employable. It had to be something where I wasn’t answerable to anyone and could do my own hours.
I took a big risk (financially) to start this up. I didn’t have any money other than some savings. Never had any inheritances, or lottery wins.
I just borrowed and kept on borrowing . . . ! Including re-mortgaging the house – with my husband’s agreement of course.
It was designed to be long-term – and will be very long-term now. Keeping it all afloat throughout the last few years (since the credit crunch and recession started in 2008) must be one of the hardest things I have ever done.
Unlike GPs and other medical people I have no guaranteed salary at the end of each month. Sometimes a loss. And I just have to work the hours it takes.

NB. My point here is not meant to be “Oh woe is me” or “I never knew it would be this hard” . . . etc etc. It is simply that I am working very hard – but am still treated dismissively at my GP surgery. It seems that no matter what you do, or say, if you have CFS or ME noted on your files – you are deemed not worth bothering with.


But : why do I want to read this file, if it is going to make me even more angry ?

Because I have to.
I have to see the contents in black and white for myself.
I feel it will confirm I have not been over-sensitive all these years. In feeling I have been badly treated by people who are highly paid professionals. Who I had turned to and had relied upon to help me.
And it will prove that I have not been alone. And have a very justifiable right to be angry.

The CFS is not ME row

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Before I joined Twitter I didn’t realise that there was quite a row going on over CFS and ME.

Now that I’ve been on twitter for a while – I have seen so many tweets on this subject.
Eg :
Your CFS isn’t as bad as our ME
We have ME and its more serious than your CFS
If you had ME and got better – then it wasn’t really ME in the first place. And maybe “just” CFS.

Etc Etc etc . . .

And I just want to say here – I am sick to the back teeth of all this.

My diagnosis was CFS.

  • It was what the GP called it on the day – after the other stuff had been ruled out.
  • It took a struggle of more than 12 years to finally get a diagnosis at all.
  • I have a big list of symptoms to deal with – luckily not all at the same time.
    (I listed them in an earlier post today for info.)
  • Frankly I don’t care if it is called CFS or ME. All I know is – it has been a very big problem in my life, for a very long time.
  • I also know I am not anything near as bad as many out there – who have a more severe form of CFS or ME.
  • I have met people with CFS who have been much much worse than me.
  • And I have met people with ME who were less affected and having a fuller life.
  • Some people with CFS have had loads of tests – some just a few.
  • Some with ME have had extensive tests – but also, some just a few.

I don’t think there is any “black & white” with this.

I do understand the reasoning for many people and charities wanting the name CFS scrapped – and I agree it does nothing to convey the seriousness of the condition. As people just hear the word “fatigue” and mentally dismiss it as not very important.

But I do feel that we should all be on the same side.
Whether CFS or ME.
I mean they are both bloody awful at times.

Surely ?

Any thoughts/opinions/comments very welcome.

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