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Swings amongst the Roundabouts

Anyone reading through the numerous posts on this site could get the impression that nothing encouraging ever happens in the world of ME. Well it often seems that way, but good things do occasionally come along and I have to admit, if I’m honest, that these posts are more likely to be bearers of bad news than good because I’m more likely to pick up my tablet and write about something which has annoyed me.

Having moaned so much about journalists last time, however, it seems only fair to redress the balance by reporting when one of them has done a good job. So congratulations to Tom Whipple of The Times for a well informed article on the review of the NICE Guidelines. Thanks also to the ME Association for providing a way round the paywall – and to Dr Keith Geraghty who appears to have been instrumental in setting this article up. I really hope we can look forward to further reliable dispatches from Tom in the future. There’s a lot of opportunity in the ME field for any journalists who are willing to consider taking the trouble to get to the truth.

And speaking of NICE, the decision to review the guidelines after all came as another piece of good news. Bearing in mind the information available, the revised advice in the USA, the petition with 15,000 signatures, and the Early Day Motion in parliament, you might have been forgiven for anticipating a change of mind at NICE, but we’ve got so used to having our sensible arguments ignored, that it came as quite a shock when it actually happened.

 

And now yesterday, another good media item on M.E., this time a special phone in on BBC Radio 4’s ‘You and Yours’. Congratulations to Dr Charles Shepherd and to all the callers who did an excellent job. Prof Crawley was less impressive but more of that in a moment. I know that a great many patients contacted the programme so well done to you lot too. Here, for what it’s worth is my own contribution, dashed off yesterday afternoon. Yes, I’m moaning again…

Dear You and Yours – Thank you for your programme on ME/CFS which was much better informed than most items concerning the condition which appear in the media. I’m sure that many patients will have welcomed it. However, there are a few things I would like to bring to your attention:

1) There are two types of CBT used for ME/CFS. The first is simply to help patients come to terms with having the condition, dealing with feelings etc. This is the same as would be used for any other physical condition, such as MS or cancer. This can be very helpful and most ME patients do not have a problem with this. However, the type of CBT most frequently used for the condition is very different. It is used to try to convince patients that there is nothing physically wrong with them, that they are simply being kept ill due to deconditioning and all they have to do is to exercise more to get better. This flies in the face of the physical evidence and when used in conjunction with graded exercise therapy can make patients a lot worse. Many patients have become permanently severely disabled due to this approach. (This is the type of CBT that was used in the infamous PACE Trial and is still used in many NHS clinics. So when its proponents say that there isn’t a problem because CBT is used for other physical conditions they are, I’m afraid, intending to deliberately mislead.)

2) No mention was made on the programme of the severely affected, who comprise about 25% of patients with ME/CFS. The vast majority of these are permanently housebound or bedbound. Many are unable to even sit up in bed, tolerate light, or converse with their loved ones. Most of these receive no medical attention whatsoever as GPs often refuse to visit them. Most doctors do not believe that people ME/CFS can become so severely ill, and wouldn’t know what to do about it even if they did.

3) The first forty minutes of the programme were excellent so it was disappointing that you gave five minutes at the end to Prof Crawley with no one to challenge her. She is one of a small group of UK doctors who have built a career on poor quality, misleading research which has only led to confusion in the field. Her latest paper on the lightning process is an example of this but there have been many others. Studies such as these (and the PACE trial itself) are misleading for numerous reasons but one of the problems is that many of the patients selected do not have ME/CFS at all but fatigue due to other conditions such as depression. Many of these will respond well to graded exercise or possibly the lightning process, ‘treatments’ which are harmful to people who really have ME/CFS. This would not be a problem if efforts were made to clearly distinguish between the different types of patient but Prof Crawley persistently fails to do this, conflating patients with ME, CFS and generic fatigue. These days she is frequently in the media, much to the dismay of many patients. We have noticed that there is never anyone to challenge her point of view. Why not? It would have been interesting to listen to Dr Shepherd in conversation with her, for instance. I hope that if you cover the subject again, Prof Crawley will not be allowed to go unchallenged.
Notwithstanding the above, your programme was like a beacon of light amid a sea of misinformation about our condition. Thank you for producing it.
Hmm, ‘beacon of light’ may have been a bit over-enthusiastic but it’s best to give encouragement where it’s due. Lets hope to see further outbreaks of truth in the UK media soon…
P.S. Yes, I know I’ve conflated ME and CFS myself. Sorry. But it seemed best to write using the same terminology they used on the programme. Advance notices for ‘You and Yours’ spoke of ‘chronic fatigue’ but it seems that someone put them right on that one. By the time of the actual programme they were saying ‘ME/CFS’. At least that’s some progress.
Author SpoonseekerPosted on September 27, 2017September 27, 2017Categories ME/CFSTags BBC, CBT, cfs, Charles Shepherd, Esther Crawley, GET, Keith Geraghty, Lightning Process, mecfs, NICE, severely affected, The Times, Tom Whipple, You and Yours1 Comment on Swings amongst the Roundabouts

Spotlight on GETSET Julie

This follows on from my previous post on Prof Peter White’s new GETSET study: Do GET Yourself…

GETSET Julie illo

The star of the GETSET guide is ‘Julie’, a (presumably) fictitious patient who valiantly adjusts her activity diary to ‘stabilise’ her schedule so that she is doing a similar amount of activity every day. Julie has already become a favourite with online patients who are impressed with her remarkable level of activity for someone with CFS/ME. She now has her own Twitter account and according to her profile picture wears a Wonder Woman suit.

This is scarcely surprising, as before commencing therapy she was working five days a week, walking to work and back two or three times a week, attending a weekly yoga class, and going out with friends on Thursday and Saturday evenings. In spite of all of which, she sought medical help for CFS/ME.

I suppose we have to assume she is a typical patient of Prof White’s. Why, after all, would he choose to use a diary from an untypical patient? So once again we are left wondering what illness we are dealing with here?

Julie’s attempt to stabilise her diary is also interesting. From my experience of my own local NHS clinic, which used to be one of the better ones, setting a baseline level of activity for their own rather more patient-driven strategy usually entailed cutting back considerably on the total level of activity, partly by lowering standards on things like housework.

By contrast, the remarkable Julie was able to stabilise her week’s activity by fitting in an extra hour-long study period, trebling her hour-long reading sessions from two to six, introducing three hours of housework (which she had previously neglected entirely), spending an hour phoning round her friends (again previously neglected), going out for Sunday lunch, and even cramming in five extra hours of TV – all this at the same time as keeping up her two nights out a week, her yoga class and her thirty-five hours at work – though the latter now included three ten minute rest periods a day (so it’s good to see some pacing going on).

Presumably work were ok with these rests, though it does stand out as a possible example of the clinics expecting more cooperation from employers then they’re actually prepared to give. Nevertheless it is quite a feat, this ‘stabilisation’ of Julie’s; you have to wonder how she does it. Has she overturned the laws of mathematics?

Not quite, though the answer is Wonder Woman-like enough. She does it by taking twenty-one hours less sleep a week.

That’s right. You heard it. Twenty-one hours less sleep. That’s the equivalent of three hours less a night. All that neglecting housework was obviously making her dozy. Now she’s stabilised and doing all the extra stuff in an orderly manner, she no longer needs so much sleep.

And how long does this massive change take her: adding in three hours of housework, extra study and reading, extra time for friends, plus cutting out twenty-one hours of sleep etc etc? The guide warns ‘it may take a week or longer’.

Well, Rome wasn’t built in a day, but I suspect Prof White might have wanted it finished by the weekend.

On top of all this, Julie has to add in some stretches, and then some favourite exercise (on top of the three hours of housework she’s just introduced) and then increase the amount of exercise by ‘no more than’ 20% a week.

The guide advises: 

You may find that at the beginning of a week when you have increased your exercise time that you experience some stiffness or fatigue. Do not worry – this is a normal response to increased activity. If you continue with your exercise, and do not cut back or add any other physical activities, your body will adapt.

Thank goodness for those adaptable bodies of ours. We’d be in a pickle without them, wouldn’t we?

Seriously, though, the more you read this stuff, the more you think they must be talking about something other than ME. Yes, many of us struggled on at work for ages, dragging ourselves around, but we didn’t manage two nights out a week and a yoga class as well. And if we stabilised to what we could readily cope with every week, we wouldn’t be adding in extra studying and housework thank you very much.

It seems obvious that this plan was not written by someone with ME, nor by someone who had ever listened to anyone with ME (not really listened). Even the grading of the different activities (into high, moderate, and low level activities and rest/sleep) is a nonsense.

OK, walking, shopping and yoga are classed as high, which is accurate enough; but working itself is classed as moderate, as is housework (which any ME patient knows is strenuous exercise). Showering is classed as low level, but this is also strenuous and can be a landmark activity. For many people with ME, it is all they can do in a day. Talking with friends on the phone can also be strenuous in its way. It is not ‘low level’ for most of us.

So are they really dealing with ME or with other forms of chronic fatigue?

The NICE criteria were used for the study. These were never intended for use in research and are unduly inclusive, as with Fukuda. They are only a little better than the much derided Oxford criteria. They require fatigue with (arguably) post exertional malaise but unless this is carefully defined, it can gather in all and sundry. Many other typical ME symptoms are mentioned in the NICE definition but only one of them is required. So we could be talking about a sample of patients most of whom do not have ME but some other form of chronic fatigue: a whole brigade of Julie’s.

This may indeed be the case because one of the exclusion criteria for the trial is ‘contraindications to exercise’, So really any patients with genuine ME should have been excluded from the sample. Research such as that by Prof Mark VanNess has shown that we have an abnormal response to exercise, while the US Institutes of Medicine suggested that ME should be renamed Systemic Exertion Intolerance Disease to describe the condition in terms of this essential characteristic. So ‘contraindications to exercise’ should certainly apply to us.

Indeed, patients have long suspected that many people with genuine ME have been excluded from exercise therapy trials (and also, incidentally, from NHS clinics) because it was clear they were too ill to respond well to the ‘treatment’ on offer. The trouble is such trials are nevertheless presented as relating to CFS/ME – or even just to ME – so that what may work for generic chronic fatigue is assumed to also work for what is an entirely different, much more serious, condition.

None of what I’m saying here is exactly groundbreaking and if I don’t get to the end of this soon one or two of you (Julie excepted of course) may be nodding off. But what I have less often heard discussed is the question of why proponents of the deconditioning (aka biopsychosocial or bps) theory do not simply accept that their ideas don’t apply to everyone?

If patients with fatigue due to depression, for instance, respond well to GET and CBT, then why not try to specifically identify such patients instead of dragging ME patients into it too? The researchers might then improve on what are quite frankly pretty mediocre results even with all the sleights of hand with the figures; they would stop getting hassle from us; and patients with ME could be finally left alone to get the rest we need. It seems to me that this would be win-win situation.

From time to time the bps researchers do this in a half-hearted way. They’ve been known to say that their research only applies to CFS, not to ME, for instance – and here in the GETSET paper, reference is only made to CFS, not to ME. But there is no consistency. The GETSET patients’ guide – in contrast to the paper – refers to CFS/ME, and when the two are conflated by reporters in the media, Prof White and his colleagues rarely if ever correct it.

So why do they insist on muddling us all together? Can they just not bear to lose us as their patients? Or could it be that they need us in some other way? Could it be that they need the presence of ME patients to make their theories appear to stand up?

Take deconditioning for instance. If you look at Julie with her five day working week, her walks, her yoga, her nights out twice a week etc, how can it be that she is deconditioned? Surely she does so much that she can’t be… But if she isn’t deconditioned, then how – according to the bps theory – can she be ill?

Maybe the researchers need the presence of some really ill people (who look like they might be deconditioned) to lend their theory some credence, to make it seem like they know what they’re talking about? Because Julie may benefit from the ‘therapy’ but she doesn’t fit the theory any better than we do.

Hmm, just thinking aloud really that last bit and it’s not really up to us patients to make sense of it all, more to point out where things don’t add up. So it may be worth summarising the blatant incongruities I’ve encountered while going through the GETSET guide one more time:

How can they claim there’s no implication that the condition is ‘caused by psychological factors’ when the treatment is based on deconditioning due to false ideation?

How can the treatment be relevant to ME if patients with contraindications to exercise are supposed to be excluded?

The GETSET paper talks about CFS and the guide about CFS/ME. Why the discrepancy?

How can a supposedly typical patient like Julie be deconditioned when she’s been working five days a week, attended yoga class, gone for walks, and had evenings out twice a week?

On top of which there are additional problems with the trial which I haven’t gone into here. These read a bit like the bps researchers’ greatest hits. They include:

  • No significant improvement in physical functioning reported.
  • Addition of a new primary outcome measure after the trial had started.
  • All outcome measures were subjective and self-reported.

And, this being bps, there’s more as well of course. You can take a look at a detailed critique of the study from Dr Charles Shepherd of the ME Association here.

Right, Julie, it’s time for your yoga class now…

 

(Julie’s ‘before and after’ schedules can be found on pages 10 and 11 of the GETSET Guide.)

Author SpoonseekerPosted on July 3, 2017July 3, 2017Categories ME/CFSTags cfs, Charles Shepherd, GET, GETSET, mecfs, NICE, Peter White, Prof Van Ness, SEID12 Comments on Spotlight on GETSET Julie

Why We All Need To Sign The OMEGA Petition

((Please note that I am not involved in organising the OMEGA petition.))

It’s taken me a while to sign up to the OMEGA petition because I’ve really wanted to find a way for the MEGA ‘biomedical research’ study to work.

Steps could be taken to improve the original proposal. As suggested in the previous post, the patient sample could be obtained not from the NHS clinics but from the existing UK Biobank. There are nowhere near enough samples in the Biobank at present but there is already funding for more, and more samples still could be added as further funding is obtained. Using the already established methodology, with patients coming through GPs, this could produce a reliable sample with the focus on PEM. There would be plenty of severe and moderate patients and – if my rudimentary understanding of ‘big data’ is correct – the sample need not be as large as the one from the clinics as patients with other fatigue conditions would not be included.

If Dr Charles Shepherd – or someone appointed by him – could be in charge of this then I am sure that the majority of the patient community would get behind the project. But would such a switch be achievable? That is the problem. The word is that Prof Esther Crawley is in charge of patient selection – and is unlikely to want to change the way it is done.

The involvement of Prof Crawley, of course, has been one of the main reasons why patients have been uneasy about MEGA right from its first announcement. Yesterday’s publicity about FITNET, Crawley’s upcoming online CBT study, has come as a timely reminder of why that is.

Yesterday’s reports were brimming over with misinformation. Continue reading “Why We All Need To Sign The OMEGA Petition”

Author SpoonseekerPosted on November 2, 2016November 24, 2016Categories Advocacy, ME/CFSTags advocacy, CBT, cfs, Charles Shepherd, children, Clark Ellis, Esther Crawley, mecfs, MEGA, severely affected, Sonya Chowdhury, Tanya Marlow, The i, Utting-Wolff4 Comments on Why We All Need To Sign The OMEGA Petition

A Broader Picture

The last draft post I wrote about the MEGA petition was superseded by events before I finished it, so I’ll try and crack on with this one before the same thing happens again. Of course ‘cracking on’ in ME terms is still kind of slow but I’ll see if I can break the tortoise barrier.

So, what’s happened recently?

Well, we’ve been told that Peter White is retiring from research and will only be an ‘advisor’ to MEGA from now on. This perspective appears to be endorsed by the latest list of MEGA personnel, which no longer includes him. I can only give a muted ‘hurrah’ to this one. Advice is dangerous stuff and you can still do a lot of damage with it. His PACE Trial is swiftly becoming a watchword for bad science (see here, here, and here). Is he really the sort of ME ‘expert’ that either we patients or the MEGA team want around to guide this latest project?

It really is astonishing that MEGA apparently do still want him around after all he has done, and that they clearly expect patients to put up with it. It seems to me that if a passing Martian was given a brief course in English and the full facts, then even he (or she) would swiftly understand why we don’t want Prof White anywhere near this project. Why do the MEGA team not get this?

People with ME have  been left on the scrapheap for decades. I myself have been ill for over thirty years. That’s over half my life. I have no children because of it. I lost my job. My life is very limited. Yet I am one of the relatively lucky ones. I can sit and tap at this keyboard – as long as I take plenty of rests to fend off the shoulder and eye pain and overall exhaustion. There are plenty of others who have to spend all their lives in bed, who can’t stand the light, who can’t even talk to their loved ones. We’ve all heard about Whitney Defoe whose birthday it recently was. He is not alone in his suffering. The vast majority of the severely ill are left to fend for themselves as best they can. Rarely do doctors come near them and they wouldn’t know what to do if they did.

And all this time, all these decades, so little research has been done, in large part because of the fairy story dreamed up by the PACE researchers and their associates: the fairy story that Continue reading “A Broader Picture”

Author SpoonseekerPosted on October 7, 2016October 14, 2016Categories Advocacy, ME/CFS, PACETags Action for ME, CBT, cfs, Charles Shepherd, children, CMRC, diagnosis, Esther Crawley, GET, Jane Colby, Julia Newton, ME Association, ME Research UK, mecfs, MEGA, NHS, NICE, PACE, Peter White, severely affected, Stepehn Holgate, Victoria Strassheim8 Comments on A Broader Picture

Time to be Heard

Six weeks on from the infamously unhelpful article by Sarah Knapton in the Daily Telegraph, the online version of the newspaper has published an article on ME by Dr Charles Shepherd of the ME Association with a view to correcting some of the misinformation. This was part of a deal which was struck by way of redress for the Telegraph falling so short of the truth on this occasion, as part of which they also published a ‘clarification’ of their assertion that ME isn’t really a chronic illness. As the clarification stated that the study they had reported actually said no such thing, it might have been more appropriate to call it  a ‘correction’ but I suppose you can’t expect a leading national newspaper to have such a precise grasp of the English language.

As for Dr Shepherd’s article, it doesn’t appear in the print edition, this in marked contrast to Knapton’s article which was linked from the front page. We have elderly relatives who read the original article but will only receive Shepherd’s piece because we’ll print it out and send them it. Many other Telegraph readers will sadly remain in ignorance.

This sort of imbalance is pretty much standard, of course, in situations like this, and Dr Shepherd and the ME Association are to be congratulated for at least getting the deal they did. It is worth, too, saying a word or two extra in praise of Charles Shepherd, who has been performing duties like this on our behalf for the best part of three decades now, plodding time and again to the barricades to call out the truth into the no man’s land of ignorance, doubt and incomprehension, then plodding patiently back again in the knowledge that he will probably have to do the same thing all over again in an another week’s time. And another. And another. The man is a hero. We are very fortunate to have him.

We are also lucky to have ME patients such as Tom Kindlon who have been plugging away with well reasoned comments for years, slowly exposing the fracture lines in the PACE Trial and counteracting other misconceptions. Not all of us are capable of such exhaustive feats of analysis, and yet there is a growing understanding that we all have a part to play in getting the truth out there. Continue reading “Time to be Heard”

Author SpoonseekerPosted on December 11, 2015January 9, 2016Categories Advocacy, ME/CFS, PACETags #MEAction, advocacy, cfs, Charles Shepherd, ME Association, mecfs, NIH, Oxford criteria, P2P Report, Phoenix Rising, Spectator, Tanya Marlow, Telegraph, Tom Kindlon4 Comments on Time to be Heard

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