Tag Archive | cfs

Roundup of the Summer

I just thought, as the sun is streaming in where I am sitting and brightening my spirits, that I would do a quick (ha! Sorry it got long!) roundup of what’s been happening to me over the summer.

I’ve been very quiet, I’m sorry. I have noticed a pattern of becoming ill just as the summer is starting and getting a bit better as the weather and the seasons turn to autumn, but this year I have got progressively more ill as the summer has gone on – perhaps it’s due to the ‘Indian’ summer we’re having down here in Cornwall? (Which is lovely by the way!) I actually love the heat and the sunshine, but for some reason it doesn’t agree with my body.

Somebody suggested I might have reverse SAD, and I have struggled with depression and mental health issue this summer, so I don’t know if that is the cause of my summer lows, but it definitely wasn’t helped by some blood pressure tablets (Amlopidine) I was given. They did nothing to help my hypertension, but they totally flipped me out mentally. I stopped them and tried again three times so I know they were definitely the cause – I was experiencing racing thoughts, ultra-rapid changes of mood, agoraphobia and suicidal thoughts. I even contacted Outlook South-west for help, but they were only interested in the agoraphobia. I have had a series of telephone therapy sessions but it hasn’t really been very helpful. The racing thoughts and mood changes stopped as soon as I stopped taking Amlopidine, but the rest has stuck around. I think that all the stress and upset of eviction and the last few years made me vulnerable and susceptible to mental illness and Amlopidine pushed me over the edge.

At the same time, I was feeling very extremely ill physically, with increasing numbness, tingling, balance issues and migraines in addition to all my other symptoms. After being told for the umpteenth time by my GP that “there is nothing we can do for you”, I made the decision to change surgeries and get myself a new GP.

It was SO totally the right decision. Already I have been offered referrals to a Neurologist to rule out MS and a Rheumatologist to investigate the possibility of RA or Sjogrens with the promise of further referrals to come. Finally I am hopeful that it will be possible to get to the bottom of what my health issues really are and then move towards healing and health after so many years. (12 and counting)

On medical advice, I agreed that the vegan diet was doing me no good, and I have moved back to a paleo / primal style low carb diet. At first I only added fish but now I am back to eating meat as well. I began to feel better for the first three weeks and then crashed very badly. Having started to read Dr Sarah Myhill’s excellent book “Diagnosis and Treatment of Chronic Fatigue Syndrome: Mitochondria not Hypochondria”, I have realised I was probably going too low carb (under 20g per day) and on her advice I am starting to take a supplement of a specific sugar called D-Ribose which she says is needed for certain hormonal conversions in the cells. It is a sugar which the body can normally synthesise itself, but people with ME can’t make it so it becomes an essential supplement. I will let you know when I have read more of the book and if I see any improvement. I’m also looking again at the Trim Healthy Mama diet (you know, the one that I slated not so long ago), realising I may need to incorporate some E meals (with light carbs) due to my health issues.

Incidentally, since going back to wheat-free, low carb / paleo / primal my blood pressure and cholesterol have almost normalised. Sadly, the weight is not shifting at all. (But at least it’s not going up any more as it did on vegan and vegetarian diets)

I haven’t been able to go to church since about May and that has definitely contributed to my feeling of malaise mentally. Even though we are living in town, I have been very isolated indeed. On the few occasions I have driven out to meet people I have been very ill afterwards so I am having to take it very easy and pace my energy out carefully.

On the housing front, I am not happy at all. Yesterday we went to see a house. It was big, but dark inside and it’s far away from husband’s work, so he didn’t like it and I can’t seem to persuade him to move. But it was beside a beautiful babbling brook that you could hear from inside or sit outside and watch it. When I got home I cried and shook with rage and grief. I feel so angry that husband moved us away from our home 5 years ago to seemingly never-ending stress, and doesn’t seem to care that it has made me so much sicker, that I haven’t been able to make friends, that I’m miserable and ill and that a three storey house is so totally inappropriate for somebody with ME.

I sat beside my bedroom window this morning and tried to imagine that the rumbling noise and clatter of building trucks and machinery was a babbling brook instead.

So my situation now is mixed. I am very happy and hopeful about my change of GP, but desperately unhappy about my living situation (and none too happy about my marriage).

I’m not sure whether I’m hopeful that things will improve as the autumn rolls in. I feel that I can’t be happy in this house, it’s just so stupidly arranged. Kitchen on the ground floor, living room on the first floor and bedrooms on the second floor. I just can’t cope. If I moved down to the tiny single bedroom on the ground floor, I’d need to go to the second floor to wash. I could go on and on but I won’t. Suffice to say, this house is making my life and health much worse, and I can’t wait to get out of here. The prospect of staying makes me desperate.

To finish on a light and happy note…. I try to come up with a list of 5 things to be grateful for every day (I sometimes post them on my @health_Shmi twitter account). Sometimes I struggle to come up with anything, in which case I am grateful for the 5 other people in my family. But here is today’s list: sunshine, hifi playing random CDs (Youngest son is my DJ), happy fat cat laying in the sun, daughter made me a coffee, and finally it is Friday and the weekend is coming 🙂

Enjoy!

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Grumbles

Just a quick (ok less quick as it turns out) grumble. I’m still clearing out our old house and trying to clean the darn thing.

We have had the de-humidifier going non-stop for three weeks, and some of the more disgusting black mold has disappeared, but I just feel incensed that we have had to live in these awful places, and that our scumbag landlord would add insult to repeated injury by turfing us out on our ear for profit.

I sat in the garden yesterday, looking at the beautiful view of fields and the sea, and just wept thinking about the place we are moving to, with a sorry excuse for a tiny garden with 6 foot high fences and a view of a shed. Ok, we’re escaping the mold, and our tenancy should be safer now as it’s no longer private renting, but it’s not a clear improvement by any means.

My mum keeps calling to say first one day that she’s desperately unhappy and can’t cope with living alone and wants to come and live with us (so can we get the ‘spare’ room ready for her), and then the next day that she doesn’t want to leave London and would rather live near my brother. I’m sure she can’t help it, but it’s relentless and feels like emotional torture.

Also, about three weeks ago I wrote to the Church hierarchy with an update confirming that, after my year of waiting, I was still interested in ordination. I still have yet to receive any kind of acknowledgement at all despite specifically requesting one. In the meantime, I sent details of an online course to the same person that I thought might be interesting. Bearing in mind that I wasn’t asking for the church to pay for the course, the fact that I received a very terse response “NO” within five minutes felt like a big slap in the face with a wet fish.

Frankly, I’m no longer sure that I want to be connected with an organisation that treats people so rudely.

And then finally, and no doubt due to the amount of stress I’ve been under, I’m experiencing what feels like the beginning of another relapse – all my lymph nodes are swollen, my throat is sore, my head, back, neck and spine are tender and my arms and legs are achy and weak, so I am having to take it easy and move slowly to hopefully ward it off. Last night I went to bed around 9pm, slept round the clock, and woke up with a migraine. The washing, and washing up are piling up around me and I can’t do anything about it.

A New Name for ME: Good for us or bad for us?

ME, commonly confused with and lumped together with the unexplained chronic fatigue of ‘Chronic Fatigue Syndrome’ – primarily by the NHS – has a rather amusingly large number of hashtags on twitter: #ME (obviously), #MEcfs, #cfsME, #CFIDS (Chronic fatgue / immune deficiency syndrome), #MyalgicE, #MyalgicEncephalomyelitis, #Spoonie even, and now we can add the new hashtag #SEID.

SEID is the new name that the American ‘Institute of Medicine’ has given to the condition, christening it ‘Systemic Exertional Intolerance Disease’.

There are several things to note about this – please add your own thoughts as well, as I am sure I have missed plenty that could be said about this.

Improvement:

– Replacing ‘syndrome’ with ‘disease’ sounds like an improvement: ‘syndrome’ suggests an unknown collection of symptoms that fit loosely together but the connection between those symptoms may or may not be relevant. ‘Disease’ makes it sound a little bit more of a legitimate illness, recognised to be one coherent whole. Perhaps.

– The word ‘systemic’ is helpful in that it seems to acknowledge that whatever is causing the symptoms is affecting the whole body (although that’s not at all obvious in the diagnostic criteria).

– The removal of the word ‘fatigue’ is helpful since, although fatigue is often a core symptom, concentrating on fatigue has masked all else. For many, pain is a much more pressing issue than fatigue.

– Emphasising ‘exertion intolerance’, or ‘post-exertional malaise’ should now put paid to the dreadful PACE trial, CBT and GET – all of which are known to worsen symptoms in patients with ME (as opposed to any other type of chronic fatigue of unknown cause).

Steps Backward?

There are several things I am confused about and concerned about, which may well represent steps backward and put patients with ME in more danger of misdiagnosis and inappropriate treatment:

– The new proposed diagnostic criteria mention nothing of pain – as previously mentioned, for many people fatigue is much less of an issue than pain. For myself and many others, this pain is not a result of exertion at all, I am simply in constant pain.

– The new name and diagnostic criteria do nothing to address the cause of the condition. Even ‘Post-viral fatigue’ was a better name in that regard. The fact that the diagnostic criteria are so broad (and despite removing the word ‘fatigue’ actually still seem to actually focus on fatigue / post-exertional malaise) and remove such core symptoms as sore throat, flu-like pain, and cognitive / neuro symptoms, may actually make finding a cause more difficult, and it will almost certainly make finding funding for research focused on the missed symptoms more difficult.

– The WHO (World Health Organisation) already has an agreed definition for ME and categorises it as a neurological condition under ‘disorders of the brain’. Who are the IOM to redefine the condition? (Who are the NHS, for that matter to disagree with the WHO?) See the Action for ME document which details the WHO definition and others.

It has been suggested that the whole SEID renaming and re-framing may actually be a Trojan Horse. I’m sorry to say I can well believe it. Inevitably the infamous psychiatrist, Simon Wessely has been asked to comment on the change of name and diagnostic criteria, and according to the article in New Scientist, he ‘welcomes’ the change. That does very little to reassure me that SEID will be any kind of improvement over CFS.

I’m concerned it may add to, not reduce, confusion around this condition,” he says. I never thought I would agree with such a man (who, since it is nowhere legitimately defined as a psychiatric condition, really should not even be asked.) But there we are. We’ll have to watch and see how this impacts us.

ME: An Alternative View

The following website belongs to a friend of mine, who has an alternative and controversial view on what ME really is:

http://aboutmy.me/

I think that in my case, this probably applies, and I am working on the basis that thyroid and adrenal issues have not been adequately or thoroughly investigated by my doctors.

But I think that the thyroid and adrenal connection is only one part of the puzzle – it doesn’t fit the profiles of the outbreaks of mass ME such as the Royal Free case, in which dozens of patients and nurses came down with the same illness.

But it is definitely an issue that must be properly investigated before ME can be legitimately diagnosed.

ME Awareness Month

The month of May is “ME Awareness Month”, with May 12th being the particular day, and I have also seen the week starting May 11th designated as ME awareness week.

ME is classified by the World Health Organisation as a neurologically-based disease. It is of unknown cause, although there are several theories including viral and environmental agents. There is no known cure.

Unfortunately, in the UK the NHS seems to have ignored the WHO’s classification of ME as a specifically neurological illness, and has lumped ME together with any and all unexplained tiredness and fatigue, which can in fact be caused by a number of things, including Lyme Disease, Lupus, vitamin B12 deficiency and Pernicious Anaemia, Thyroid and adrenal problems, Sjögren’s, PCOS and other endocrine diseases, MS, fibromyalgia, depression and more, and has called the whole collection CFS, MEcfs or cfsME.

Within the umbrella of CFS there is obviously a vast spectrum of symptoms which range in severity, from those who are experiencing a mild loss of ‘get up and go’ to those who are in constant pain and utterly bedbound and unable to care for themselves, and since it is an umbrella term, treatments that may be helpful for mild types of CFS, such as GET – graded exercise and CBT – cognitive behavioural therapy, are wholly inappropriate and can be harmful for those who actually have ME.

CBT can be useful for people not coping well with any long term chronic illness but should not be touted as a main treatment for ME in the way that it is, based on the faulty assumption that CFS is inevitably linked to caused by psychological factors, and GET is harmful to PWME who have the key symptom of Post exertional malaise.

This situation has been exacerbated by the psychiatric establishment which has greedily claimed all ‘CFS’ patients as their own, baselessly alleging that all CFS must be related to mental and emotional factors.

Thus the tendency is to treat all CFS patients as though they are all suffering from an unexplained, probably psychologically-based, rather than neurologically-based illness, regardless of the severity, and further to fail to investigate thoroughly or adequately in order to rule out any other cause (such as those listed above).

There is no definitive test for ME yet (largely because genuine research has been so scarce), and so ME should never be diagnosed until every other possible cause has been eliminated.

The classification of ME together with any unexplained CFS is a nonsense which means that people who actually have curable and treatable diseases aren’t getting the help they could and should be able to expect, while those with ME are simply treated with disdain instead of receiving the palliative care they need.

This is a wholly unacceptable situation for everybody involved, which helps no-one, except those few outspoken psychiatrists who like to gain notoriety by making the psychological case and denying the reality of the suffering.

A friend has also pointed out that MS, asthma, duodenal ulcers and other illnesses were all considered psychiatric problems before biomedical caught up.

I will try to post more on ME and CFS over the month.

What can you do to help?

Please help to raise awareness, both of the suffering and this intolerable situation of conflated classification:

• share this post
• like and share the facebook pages for May 12th and the ME Association
• follow the #MEcfs hashtag on Twitter • you can download and print ME awareness leaflets from
http://www.mechat.co.uk/db/tips.htm • donate to ME Research UK
http://www.meresearch.org.uk/support-us/

A quick p.s. to say I got the names of some of the treatments confused (blaim brain fog!) so I have done a quick edit and an update of my original post.

Additionally, a note on the ‘Lightning Process’ which thankfully is not funded by the NHS, as it has harmed a number of people and made them worse so people need to be warned about this. See for example
http://www.sayer.abel.co.uk/MESNORFOLK/LP.html

Update on WHO re-categorisation of ME

I am very relieved to be able to confirm that the Guardian article which claimed that the WHO were planning to re-categorise ME etc has now been taken down due to inaccuracies, and the WHO have confirmed in a tweet that there is no such proposal.

The blog post below articulates why, despite this good news, we still have a problem.

http://loopys-rollingwiththepunches.blogspot.co.uk/2014/02/fibro-and-cfs-mental-disorders-who-must.html?m=1

At some point I will write a post on my own illness and its treatment & diagnosis.

ME to be re-categorised

Sorry to inundate you with posts today, and to post twice on the same subject, but Penny Swift Symanowski, who wrote the article on Dr Speight’s attempt to help Karina, drew my attention to this article.

Apparently the World Health Organisation whose classification of ME as a neurological order had until now had gone some way to defend patients diagnosed with ME and related conditions, is now proposing to re-categorise ME, along with CFS, fibromyalgia and others as ‘mental and behavioural disorders’.

This couldn’t be worse news for patients, and will likely result in more cases like Karina’s, along with more unhelpful treatment for adults with ME.

If anybody knows of any petitions or any other recourse to complain or campaign, please do let me know.

http://guardianlv.com/2014/02/fibromyalgia-and-mecfs-labeled-mental-and-behavioral-disorders-by-who/